Oregon Living 2020 – Blog #16 – Update on Treatments & Moving Day

Friday, Feb 21^st, 2020……  Numbers are better today. Dr. says it will take several days to show improvement, given her current condition and history. But she’s now going in the right direction. You couldn’t prove it by looking at her. She sure looks miserable, but hasn’t had much sleep until today. She’s still queasy and has no appetite (this is all typical from the chemo). She is very weak from all of the water weight from the chemo meds. As I said, she is sleeping more now. We couldn’t believe it but she has over 50 lbs of fluid weight gain!  So, needless to say, she is pretty limited in movement and miserable, both physically and mentally. Doctors are saying it will go away but will just take some time. They have also told me that some people tolerate the level of chemo she received with no issues and those people can get increased doses and maybe less treatments. But, like Lydia, there are some who cannot deal with the meds and the next round will most likely be adjusted downward. Remember, Lydia has a severely comprised immune system and these drugs are hitting her like a ton of bricks and she can’t fight back at this point in time.    

   

Saturday, Feb 22^nd, 2020…… Last night they added oxygen to her list of treatments.  They said it’s not critical that she have it, but it helps with her labored breathing and she doesn’t have to work so hard. The doctor said he wants to move her to the CCU. This is primarily because she is needing more constant care than they can provide. The staff assigned in her area have 4 rooms and she’s using most of their time. CCU will be better suited for her care.

They moved her this afternoon to CCU.  She’s still pretty out of it and when she’s not sleeping, she wants wet swabs in her sore and dry mouth. While I was there today, they were in there every moment tending to her and giving her new meds. They said all of her labs are still good but she’s pretty weak from everything that has hit her so far. Her kidney is struggling to do its job and they are watching that closely as a lot of the filtration work is harder to do with one functioning kidney. The polycystic kidney disease has long ago rendered her two natural kidneys useless, so she’s always been dependent on the new one for everything. But so far, so good.   

 

Sunday, Feb 23^rd, 2020……  She had another tough night and is still pretty much needing the constant care. Her numbers are good but they can’t get the fluid down in her system. This would be absorbed by normal processes but she is compromised. They gave her Lasix again to help with the water retention. They also have her on a catheter to closely monitor output. The doctor told me that he is going to be giving her more blood. They do not have a kidney specialist here but he is consulting with the team in Corvallis. They may want to transfer her there. TBD.

Ok, I received a call after I left the hospital this morning. The folks in Corvallis want her to be transferred to the CCU there so they can monitor her. They are concerned that the one lonely kidney is not enough to get rid of all of the fluids she currently has. And the meds are doing the job as they hoped. The fluids are causing her stress and heavy breathing, which exacerbates her issues. The Corvallis facility can do dialysis which should help in that regard.

They called me an hour or so later and said that they had sent a non-critical ambulance and picked her up and I should allow an hour or so before heading there so they can set her up in the CCU and evaluate her. I went and picked up Penny and we left but stopped by the Lebanon hospital to pick up some personal effects missed by the ambulance crew. When we got to Corvallis, they had already determined that she needed dialysis and I signed the consent form so they could put in another shunt for that. They took her down to the dialysis center for her four-hour treatment and we left for the night. We stopped and had a meal at the Mongolian BBQ place in Corvallis and then headed back to Lebanon. We will head back tomorrow morning.    

Oregon Living 2020 – Blog #15 – Back and Forth & Rylee’s B-Day!

 

Monday, Feb 17^th, 2020……  I slept in a bit this morning and then got up and dressed and had Rylee out and fed. The weather here has changed now. We had several days of clear skies and then the last few days it was rainy and cloudy. But today it is really pretty blue skies and nice even though it still is pretty chilly. I left after breakfast to go see Lydia. She had a rough night and still has not been able to eat solid foods. They have her on three different meds for the queasiness which they rotate to see which one works best. She is trying to fight off a low-grade fever so they have her on Tylenol every 4 hours. I go back and forth as does my sister so she sees us several times each day.

   

Tuesday, Feb 18^th, 2020…… Still nothing good to report. She hasn’t improved much – just weak and bloated and sores in her mouth and no appetite – all symptoms from the chemo. I am sure glad I got her into the er when I did on Sunday! They can never tell how each patient is going to react to chemo. We were not on the no-issues list that’s for sure. I can’t imagine how it would have been waiting any longer to get her in. She’s got the best care and this place is immaculate!

  

Wednesday, Feb 19^th, 2020……  When I went in today, she was awake and talking. The doctors told her she is anemic – low red and white blood cells, a blood infection (e coli) and she has a slight urinary infection – all caused by the chemo. All are being addressed by meds. They will be giving her blood soon. That is supposed to make her perk up a bit. For the most part, my sister and I have just been there to talk to her between her naps. The mouth sores have made it hard to speak so take that into consideration should you choose to call her at this time. Today, her phone was off so I guessed correctly that she wanted to rest.  Today was bingo at the senior center but I didn’t feel much like going so I spent some time resting today. I went back in the evening and she was doing a little better but she was still experiencing a 99.2 fever which is not so bad but it makes her have the chills and she shivers and shakes so she was getting Tylenol to help with that.

Thursday, Feb 20^th, 2020……  Happy Birthday Rylee!  She is two years old today. But still a pain in the ass!  But, hey, we still love her!  I made a run to Walmart to get some groceries and had to pick up some special treats for our birthday girl for today. I bought her one of those giant twisted marrow chew bones (which she proceeded to chew to pieces in just a few minutes). Later, I went back to the hospital and my sister came there an hour or so later. Lydia was sleeping for the hour while I was there but woke up and was doing better than yesterday. She laughed when I told her about Rylee’s morning. Nothing new to report on her condition. We’re hoping that the meds will knock out the infection and the red blood cells will pep her up a bit. She’s still having issues with diarrhea but has help getting to the bedside toilet. Plus, they are helping with the chafing and tenderness so that’s good.

As for me - I am doing well. I did my bone density scan and I am waiting for the doctor to approve and forward orders for my annual Reclast infusion. Around the house, I haven’t done much other than keep the butthead occupied and the house tidy and go back and forth to the hospital. I am really glad to see the warm, sunny days right now. My neighbor was out mowing his yard this afternoon.  None of the neighbors have the low wet areas that we have here so they can get theirs done way sooner than I can. We need another week or so with no rain for that to even have a chance to happen!

Oregon Living 2020 – Blog #14 – Home Again! & Back Again!

 

Friday, Feb 14^th, 2020……  I got up early and got monster puppy out for her walk. Sis was already out in the field with Quincy. When we got back, I let her out to run with Q and came in and got the towel ready. Once she gets rinsed off and dried, I can feed her. Then I made my breakfast and worked on my part of last year’s medical for the tax lady.  Lydia has to help me with her part so I will have to wait on that. Lydia said that they most likely will not release her until closer to noon, so I hung around and cleaned up the house a bit. They said she will need to have a bathroom exclusively for her use for 3 days (as she cleans out the chemo meds and toxins), so I moved my stuff over to the guest bathroom and got everything ready for her to use the master.

I left at noon and headed over and picked up my sister and we got to the hospital at 12:45 and she was dressed and ready.

She has a list of things to do (and not to do), things to eat, and things to do in the next week or so. She will need to make an appointment for the next round beginning in March but she can’t do that until she sees the oncologist on the 20^th. We got her back home and set up in her chair. She spent the day there and watched tv and caught up on some of our taped shows that I already watched. I fixed her some vegetable soup and crackers and she ate that. A good sign!  We both went to bed pretty early. 

Saturday, Feb 15^th, 2020…… She didn’t have a good night. Most of the meds have kicked in and all of them cause diarrhea, so she was up every hour. Going to the bathroom is really hard, especially now because she is severely bloated from the chemicals and the fluids she was on. It makes it very hard to even bend over or lift her legs so I have to help her change her disposable undies each time. So, neither of us had a good restful sleep. She stayed in bed to be closer to the bathroom. But we did have to go into the Lebanon Hospital Infusion Center this morning at 9:30. She was getting a shot of white blood cells. I got her in the car and we made it there and back but it wore her out. Then it was back to bed and more diarrhea.  I went out and got KFC for dinner but she barely ate.   

 

Sunday, Feb 16^th, 2020…… Last night was even worse for both of us. Same routine but she has lost so much strength and stamina that everything is hard. Today was another trip to the Infusion Center. This time (and each third day) was for a blood draw. They do this at the center because they use the port to draw the labs. On the way to the car she asked to sit down and luckily, we were next to the dining room chairs. But she missed and fell – but as luck would have it – right down on Rylee’s big padded doggie bed!  So no harm. But I knew something was wrong. We got to the infusion center and I told them I was taking her over next door to the er and they thought, given what they could see – was a good idea. They made a report and sent it ahead so she was taken to a bed in the er pretty quickly. The doctors read her history and did the requisite lab tests. Everything was ok but they said is was up to us whether she went home or was admitted. She made that call before I could – I can’t move about on my own right now so I need help. Admit me! It took another hour or so before she could get a room and get set up in it. I left and stopped and got dinner and came back home and was in for the night. I will be going in early tomorrow to bring her phone and some clean clothes and we’ll see what last night brought us.   

Oregon Living 2020 – Blog #13 – A Dentist Appt., a Bone Scan, & a Tax Appt.

 

Tuesday, Feb 11^th, 2020……  Great night’s sleep last night. Not so much for Lydia. This is day 3 of her treatment. They have upped her prednisone from 5 mg to 50 mg, so she’s pretty wired and can’t sleep. And she is hungry!  As anyone who has ever taken prednisone knows, it will cause your blood sugars to rise, so she’s “all jacked up on Mountain Dew” – a serious sugar rush! They monitor her blood sugars and have her on a diabetic and renal diet until they can lower the prednisone dosage. But she’s managed to find enough food on the menu to change it up a bit each meal and find something she likes. Today’s lunch was a stuffed mushroom, which looked pretty good even to me. All in all, she’s doing just great and looks good!

The oncologist says that based on the pet scan results, she will need 6 total rounds of chemo. The plan for now is to finish up round one of the chemo by late Thursday night, which means if everything is where they want it, she can come home on Friday morning. Then it will be 21 days at home and then they will repeat the process - she will check back into the hospital, get a room, and do another 5 days of chem through the port and be monitored like just like round 1. She will also go for a spinal tap on rounds 2 and 6 to make sure the brain is clear of any issues (none so far). No talks yet about the radiation, but that is most likely to be way out in phase 2.

As is the routine, I left her to rest and watch her tv, and I came home and ate dinner and fed and walked Rylee again and settled in for the night.   

Wednesday, Feb 12^th, 2020…… Today was busy for me. I had an early dental appointment this morning (at 8:30am) so I walked and fed Rylee and ate breakfast. Sis had brought Quincy over and left her here for the day. I made it to the dental appointment and got that done. Just a cleaning. I told them we now have dental insurance and may be moving on for the future. They wanted to keep us as patients and even called our insurance and checked and found that no, they couldn’t get authorized by my plan even though I was an existing patient here. We would both have to go through the approved network dentists. I have decided to keep going there until I have something other than a cleaning or simple procedure. Lydia has only been once but she’s had an experience in California with a ‘plan’ dentist who she did not like so she will stay with Dr. Tolman/Amanda as well. I told them about Lydia and said she may have to cancel her 2/26 appointment with them but for now she plans on coming in as scheduled.

I called Lydia after I was done at the dentist and asked if she needed me to bring her anything and got her list and gathered up everything and headed out.  This was day 4 of 5. I spent as much time there as I could before I had to leave for my next scheduled appointment (@2:20pm) - for my annual bone scan. With my osteoporosis, I am on one infusion a year, which is prefaced by this scan. I timed it so I could leave the hospital in Corvallis and drop in at the eyecare place in Albany to pick up the remake on my new sunglasses. Looks like they got it right this time. I left there and made it to the Imaging Center at the Lebanon hospital and checked in and got my wristband. The whole process there took less than ½ hour and I was on my way home. Sis was at bingo and had a rider (Lois) with her today. She got her back home ok and then came over later and picked up Quincy and they left for home. I fixed dinner and Rylee and I played a bit and I settled in and watched tv until bedtime.        

 

Thursday, Feb 13^th, 2020…… Today I had another appointment. This one was for our taxes. I had already gathered everything up and was ready for today. Sis had called and asked if I wanted to go to Kevin’s to have breakfast. Duuh!  I called and checked in to ask how Lydia was doing and then headed up to visit her for the morning and until I had to go for my appointment. They still have her on her high-dose prednisone so she’s still on a restricted diet. But other than having to have her blood sugars tested and getting a shot as necessary, she is doing remarkably well for day 5. She’s been going to the bathroom unassisted now but they don’t want her doing that. ‘Hey, if they don’t get here right after I buzz, I have to get in there somehow!”  Penny drove herself and we met at the hospital and she visited with her and then left to run her errands today. I left for my 2:00pm tax appointment. Turns out the appointment was for 10:00am!  I’m not sure how I came to write down 2:00pm but I did!  Claudine was just finishing up her last appointment and I got in. I have an easy return and, because we didn’t have enough for medical last year, I didn’t do any of those totals. She said she still needs it for state credits so I will have to get those numbers together and back to her. Since I didn’t have lunch, I stopped and got subway for linner and had that and then fed butthead. We settled in for the evening and I watched tv in my office. I have gotten so used to hearing Lydia’s tv on in the living room that I started turning it on each evening. But only one more day before she comes home!   

Oregon Living 2020 – Blog #12 – Treatment Begins & Getting the Routine Down

  

Saturday, Feb 8^th, 2020……  I ended up with a pretty good night’s sleep. Rylee has taken over Grammy’s spot on the bed!  I did my dog walk and then went out and got coffee and breakfast. I did some cleaning up around the house and sorted some clothes for the laundry and then headed off to Corvallis. I spent most of the day there with Lydia. She was doing well but had a few issues with a little fever and some chills. The team of doctors and assistants came by and gave her some more info. They will begin today with everything – all of it done here in the hospital.  First up is an ecg to make sure her heart is strong enough for the chemo, followed by the installation of the port. There were some issues with the port because they don’t normally do these minor surgeries on the weekend. They wanted to do a pick line instead but she can’t have that because of her kidney. So, they called in that surgical team and got her downstairs for that port procedure toward the end of the day. I had left but my sister was there and said she did fine. After a bit, Lydia was tired and sleepy so Sis went home for the evening.  When I left, I stopped by Arby’s and picked up something for dinner and ate that later and settled in for the night.

Sunday, Feb 9^th, 2020…… This morning my sister and I tag-teamed our visit. We took separate cars and met at Shirley May’s for breakfast, and then went to the hospital. Today was the first round of chemo. Penny stayed for a while and then left to do some errands while she was in Corvallis. The plan at this time is for 3 rounds of chemo. Each time she will be admitted to the hospital for 5 days and will be in a bed with the drip bags each containing one of the 5 different drugs in her program. The first round started today. They prepped her and started. She is doing really well and is expected to be relaxed and can watch tv or sleep. The iv bags run 24 hours but she can get up to use the bathroom (with some assistance) and can eat normally (right now she’s on a renal diet).  I am personally happy that they are doing it this way because its one-stop-shopping for her and with a minimum of effort. The other route involved coming and going to daily 8 to 12-hour appointments like my sister had to do.  And it is easy for me to make a trip to the hospital rather than moving her back and forth there each time.

I stayed for most of the day but left when she started in to a deep sleep. I got home and fed Rylee and fixed myself some dinner and then did four loads of laundry while I watched some of my taped races until bedtime.  I did call her and check in and she said she was doing fine but was tired so I didn’t keep her long.    

 

Monday, Feb 10^th, 2020…… Today, the weather was really nice. There are no showers in the forecast for the first part of the week. I got going pretty early this morning and got Rylee walked and fed, then made myself some breakfast. Then I headed off to the hospital. Lydia was doing well and was feeling just a slight pain in her ankle. She said they have been giving her Tylenol, and oxycodone when she needs it, but the pain is diminishing which they said would happen. I stayed with her most of the morning and until she ate and was resting and napping. She has talked to a lot of folks and keeps her phone on and charged. I went home and let Rylee out for a run and then left to go meet sis and Bill and Debbie at Schmizza's for an early 'linner' and a few beers.  Thanks, Bill!  We had a nice visit. They are heading back to Calif. tomorrow. Afterwards, I came home and relaxed and watched tv and finally went to bed and fell asleep pretty quickly.     

Oregon Living 2020 – Blog #11 – More Appointments and Then A Step Back

 

Tuesday, Feb 4^th, 2020……    No appointments today. Lydia got to stay in bed and relax for as long as she wanted. She did get a call today from her oncologist saying that her latest labs showed her creatine up too much. She needs to keep on her daily water intake regiment which will get those numbers back up. Re-test on Wednesday.  Butthead and I did our normal walk this morning and it was COLD! Temps got into the mid-30s this morning. The weather calls for rain but when that happens, it usually warms up so there is no snow. 

Wednesday, Feb 5^th, 2020……  We had an early appointment this morning with wound care. This is done at the Lebanon Hospital wound center. We got checked in and Lydia was nervous. But, after a bit of counseling, they calmed her down a bunch. The bump only needed some medication and a wrap. They gave us some material for me to change out every other day. I asked about her labs, which were in the same hospital and they were nice enough to call them in to do that while she was in her treatment room. We stopped and got breakfast and were done with those chores for the day. Lydia has had some rough nights sleeping so she curled up in her recliner in the living room and I left her alone. Later, I made her some lunch and then went off to play bingo at the senior center. I told some of the ladies there about Lydia. I also spoke to our neighbor, Lou, but that is about the only local people we have shared info with to date. When I got back from bingo, I got out some stuff for dinner. Tonight is was leftover chicken and cottage cheese so she could keep up with her dietary requirements before tomorrow’s procedure. I fixed some mac and cheese for me and for leftovers tomorrow.  We watched Monday’s America’s Got Talent and also The Masked Singer. I had no clue The Llama was Drew Carey!     

         

 

Thursday, Feb 6^th, 2020…… Today is the PET/CT scan. We got to sleep in this morning (7:30am) and I got up and going with Rylee. I made Lydia scrambled eggs w/cheese for breakfast. She can’t have anything more except water until after the scan.  Our appointment is 1:30pm at Lebanon Community Hospital Imaging Center. We got checked in they took her back in for the scan. They gave her a radiopharmaceutical through an IV and she had to rest in her room for 45-60 minutes. She said she had to lie on the scanning table for about 25-30 minutes and it was pretty painless but she was still very nervous. Once she was done, we headed back home and rested for the afternoon. Her next oncology appointment is next Friday so we don’t expect any results until then.

Friday, Feb 7^th, 2020……  Today was not a good day. It started out as a routine trip to a medical appointment.  Today we saw the radiation oncologist (Dr. Wahl) for a consult

But Lydia was not feeling well from night before. Her blood pressure was checked and it was really low. He also told us the pet scan showed that the cancer is also in both knees, her stomach and her lungs. They will be starting chemo next week and had appointments for the port, a bone marrow extraction (both at the same time), and an ecg to make sure her heart is strong enough. He checked her BP again and recommended that she go to the er, if not now, then later if she still felt lightheaded and queasy.  We went home, stopping by the market for some Boost. I fixed her some lunch and she felt better. But Dr Ribeiro de Olivera’s office called and told her he had a consult with Dr Wahl and she definitely should go to the Corvallis er. He called ahead and they got her in a bed pretty quickly. They drew more labs and did an ekg and put in an iv. They had two ambulances come in just after so we had got bumped out for an hour or so. The dr. finally came in and looked at her and her BP was getting better by then. He ordered fluids and said that based on dr. R's recommendations, she would be admitted.  It took a while but she got upstairs and into a room and I went home. I called her and she said they had the red blood cells iv in and going.  Her bp was normal again. She will now get all of the next week’s work done while in the hospital. They also plan to start her chemo treatment while she is there as well.  

Oregon Living 2020 – Blog #10 – Dog Sitting and the Start of Treatment Begins

 

Saturday, Feb 1^st, 2020…… Nothing going on today. The weather here was nice yesterday (no rain) but it rained last night and it’s supposed to be 90% chance of rain today. Skies looked ok for now when I had monster puppy out early this morning.  We’ll see what happens later…

No rains. Huh! Oh well, now the lawn can dry out some more! Nothing on the agenda for today. Lydia has had many calls from friends and is always glad to hear from them. She’s doing well. The pain is minimal at times and flares up occasionally. But she tries hard not to take any of the prescription pain meds unless it’s a really bad session. I think she’s only taken one hydrocodone since we have been back.

I fixed us breakfast this morning. My sister came over alter with Quincy again. She will be leaving tomorrow morning to go down to Rogue River (188 mi.) for the celebration of life for one of her childhood friends. Janice is driving and will visit her family while sis goes to see everyone. Later, I made dinner and we had a quiet evening at home.         

Sunday, Feb 2^nd, 2020……  Another quiet day. I got up and got the pooches out for their walk/run out back. The only other thing I did today was go out and clean up around the new carport. The guys didn’t leave a mess but I wanted to wipe down the painted parts that were on the ground and had some dirt on them when they got installed. I moved the boat trailer under the carport and cleaned up some old cardboard boxes that had been left in the rain last week. They were dry enough to be cut up for recycle. That was the extent of my day. I came in and watched the Super Bowl and after that we watched the first show for season three of The Masked Singer. Out of the first six:  As soon as I heard about the super bowls and then saw the White Tiger, I had picked Rob Gronkowski.  Tiger is still in so I have to wait on that. Not a clue on The Turtle, or The Kangaroo among the others. I am trying to figure out Miss Monster. I know it’s an older black female who can really sing. Maybe sounds a little like Chaka Khan. I think The Llama is Danny Bonaduce – only because I know he’s currently he’s a radio show host in Seattle and the clues mentioned both of those. Didn’t guess Lil Wayne – but neither did any of the panel!

         

 

Monday, Feb 3^rd, 2020…… We got up early and I got showered and dressed and took the dogs out again for their morning ritual. Even though there is no rain, Rylee still finds all of the wet spots to wallow and romp in! She got her early morning cold water shower to get cleaned up before I could dry them both off and then bring them in to feed them.

I fixed us bacon and eggs this morning. At around 10:00 or so, we headed over to our oncology meeting in Corvallis. We met with Dr. Ribeiro, who charted out her next steps. She has the aggressive form of lymphoma, which, as he said, is the kind we want – because it’s the easiest treatable. Lots of meds out there, he said, that will work to clean it up quickly and easily. She will need both chemo (three rounds on the chemo unless the pet scan is not favorable) and then radiation will start. He said the bump on her heel is typical with lymphoma which is definitely tied to her 21-year old comprised immune system. She has to try to stay off of her feet as much as possible. She already has appointments for the pet scan and the radiation consult. He has scheduled her for an EKG (to make sure her heart is strong enough for the treatments), and for wound care. When we got home, she heard from both of those offices and they are set for next week. He added some more labs so she did those in-house before we left (so she doesn’t need to go tomorrow). Her kidney transplant team in Portland has temporarily taken her off of her anti-rejection drugs to prep for the treatment, which is good. So, all in all, she got a lot done today with more to come this week and next. She’s handling this pretty well but does have her moments of anxiety and depression.

We stopped by America’s Best so I could return my recently-acquired sunglasses. Turns out they made a clerical error and the progression was set too high in the lenses. But just for the sunglasses. My tv glasses (single vision for distance for reclining to watch tv – think about that!) and my regular progressive glasses are working well and I’m adjusting to them pretty quickly. They will call me when the new ones are back. We stopped at Arby’s in Albany and got lunch and then came back home. Lydia has to prep for the pet scan and is on a special diet 72 hours out so I fixed her spinach and cottage cheese for her lunch. Dinner tonight will be chicken breast and cauliflower. My sister got back with Bill and Debbie and Debbie’s little sister, Jan, and they came by to visit and pick up the Q. Later, we ate and settled in for a quiet evening.