Sid Bacon

I’m especially grateful today because the Piper medical team has taken me off of the chemo regimen.  It is similar to the second regimen, which I didn’t do well with, so we are thinking that my nausea and vomiting is due to the chemo.  Perhaps they will give me a different regimen or a reduced dose of the current one. We will see, but I am hopeful that I won’t be so sick.  That will make life much more enjoyable.  We will have a houseful this weekend (my brother-in-law Paul, nephew Christian, and daughter Laura), so it will be good if I am feeling better. But if I am not, I’ll just have to do my best to enjoy their company from a reclined position.
 

Tonight I will start in-home Total Parenteral Nutrition, which is a way of giving me nutrition intravenously. It won’t necessarily put weight on me, though it could, but it should at least stabilize my weight, which is important, given that I have lost over 20 pounds lately.

I hope to get my appetite back so that I can gain weight via eating.
 

Cathy and I went on a very short walk today … first one this week! It was very nice, but it reminded me of how far I need to go in terms of gaining strength and stamina.  One day at a time ..

This afternoon will be my last radiation treatment for the week. My friend, Linda, will take me, because Cathy has an important conference that has been scheduled for months.  She will, however, be able to pick me up after treatment and take me home. It will be nice to have the weekend off.

All these speed bumps are being met with little ramps to help get me over them.  Soon I will feel better and will be headed along the right track.  It just can’t happen soon enough!
 

The weather is going to change rather dramatically over the next few days, with a high of 75 today and 64 through the weekend.  It will feel cold to us Phoenicians, but it should be really nice for our visitors.
 

Once again, I want to let you know that we really appreciate your support. The past few months have been tough, and they are probably at their toughest right now.  But, together as a team, we’ll get through them.  Thanks for all your kind words of support and your many prayers.  I need to remain positive, and you are helping me do that.
 

I hope you have a great weekend. I’ll write more on Monday.

Once the folks at Piper took me off the chemotherapy, my nausea went away and my appetite returned.  By the weekend, I was feeling really good.  The timing was perfect, as I was able to enjoy having Paul (brother-in-law), Christian (nephew, but not Paul’s son), and Laura around.  It was so much fun to feel well while they were here.  It was a great weekend.  I must say, it is really special to have my family visit … it means so much.
 

I still am dealing with pressure sores on my hips. We are trying various things to deal with those, including purchasing a 2” memory foam mattress topper, which should be arriving soon.
 

On Saturday morning I started Total Parenteral Nutrition (TPN), which is a way of providing nutrients intravenously.  This was particularly necessary when I was not eating or keeping my food down and was losing weight rather rapidly. TPN should help me gain weight, especially now that I have an appetite and am eating regularly.  It takes about 12 hours for the bag of nutrients to drip into my body.  The bag and pump are in a small back pack that I have with me the entire 12 hours.  Although it is nice when I am not tethered to the backpack, being tethered isn’t all that bad.  We have the option of having it run over night rather than during the day, but for now I feel as though I have enough things to deal with at night in terms of addressing my bed sores that I’ll leave the TPN for the day time.

We all went on a nice hike in the desert behind our house yesterday.  Paul, Christian, and Laura went on a long hike, whereas Cathy and I went on a shorter one (Cathy was kind enough to loop back early because I didn’t have the strength to go as far as the others wanted to go). This morning I went on a walk in the streets while Cathy was taking Christian to the airport. I went for 40 minutes and felt pretty strong.  The TPN and the regular eating are really helping me gain my strength back.

We will be going to Piper this afternoon.  We’ll have blood work done, then radiation therapy, and finally an exam with my oncologist.  I suspect we’ll discuss what we are going to do to replace the chemotherapy drugs. 

I have enjoyed the past few days immensely and am reminded of the importance of living in the moment.  I hope your weekend was as good as mine, and that we all enjoy this upcoming week to its fullest.

I am truly grateful for today.  I do not have much if any back pain (although my side is tender still from the percutaneous biliary drainage procedure) and I have no nausea – a real treat.  Cathy and I went on a brisk walk this morning, which is always a great way to start the day. And I definitely feel much stronger, which is fantastic.
 

Our trip to Piper yesterday was quite good.  My bilirubin count had dropped from 3.5 or so to 2.0 (a drop is a good thing).  That drop occurred after the external bag was removed, which means that the internal drainage is working well.  A value of 2.0 is borderline normal. 
 

I also had gained several pounds since late last week.  I attribute that to the TPN I am receiving and to the fact that I am feeling so much better and thus am eating well and keeping my food down. 
 

Because I have been feeling so much better lately since dropping the chemotherapy, my oncologist has decided to keep me off of chemotherapy for this week.  This is great in terms of me continuing to feel well.  If my bilirubin count is 1.8 or lower next Monday, then I will receive on Monday one of the chemotherapy drugs from the first regimen.  This is a drug that I should do pretty well with, so that is good. If the count is above 1.8, then we will probably need to consider a reduced dose of the chemotherapy drugs I have been taking in pill form.  Who knows if I’d do well with that chemotherapy, even at a reduced dose, so I really hope the count is 1.8 or below.  One of the main reasons for using chemotherapy during radiation is that it makes the radiation therapy more effective.  We certainly want that!
 

We are fortunate to have friends volunteering to drive me to radiation therapy on days that Cathy is unavailable to drive.  Today is one of those days.  Our friend, Larry, will be chauffeuring me today.  We are so grateful for the enormous generosity of our friends.  It is a concrete example of the Team working together to fight this dreadful disease.   
 

Although we have experienced several setbacks recently, I sense that things are starting to turn in our favor.  We just need to keep focused on our fight. 
 

Thanks for your continued support in this battle.

I have been discouraged lately, as it seems as though I’m getting hit from various angles … if it isn’t one thing, it is another.  The side where the drainage procedure was implemented is quite sore, and thus I can’t sleep on that side. I slept too long on the other side, essentially not moving the entire night, and consequently got a pressure (bed) sore on that hip. Now I try to sleep on my back, but I don’t sleep well in that position. It is to the point where I don’t look forward to going to bed.  In addition to all that, 12 hours each day I have to receive nutrients infused intravenously.  This means being tethered to a small backpack containing the bag of nutrients and a pump. I don’t like being tethered, and I really don’t like the fact that Cathy now has even more nursing duties to perform each day (it is quite an operation to get the pump connected to the nutrients).  She has enough on her plate already! On the less annoying side, I recently broke out with a rash on my stomach and back.  It itches, but only a little bit.  The rash looks like an allergic reaction to medicine, but we haven’t recently introduced any new medications. The rash is fairly minor … we are just supposed to watch it and make sure it doesn’t get worse. Finally, I am now battling nausea again. It has returned even without me being on chemotherapy.  I vomited yesterday and do not feel all that great today.  I blame the radiation therapy.
 

On my walk today (unfortunately I walked alone, as Cathy had to leave early this morning) I thought about all these things and decided that I shouldn’t be so discouraged.  None of these annoyances or challenges is too much. I can and will get through them. I just need to have a positive attitude and continued strong support from Cathy. I vow to have a more positive attitude, and I know I can rely upon Cathy for support ... she is so good to me.
 

Cathy will be taking me to Piper today for my radiation therapy.  It is the only medical appointment we have today (a light day …).  She was unavailable to drive me there yesterday.  Fortunately, our friend Larry was available and most willing to take me to and from the appointment.  Not only did I benefit from the ride, I really enjoyed the conversation.  Our friends are so gracious with their time.  It reminds me that this entire journey really is a Team effort. 
 

I want to thank everyone for all they are doing to help me along this journey. Your support is incredibly important, and I really cannot thank you enough.

I got to go on a brisk walk with Cathy this morning before she took off on her run.  Not only was our pace brisk, but the temperature was cool as well.  The walk was nice and it definitely was a good way to start the day (after a cup of coffee). 

I am happy to say that my rash has dissipated a great deal and it doesn’t itch anymore, so some things are getting better already.  Must be the change in attitude …

Attitude can’t seem to take care of it all quite yet (e.g., I once again was unable to keep my lunch down yesterday), but it sure makes a difference in how I live with the challenges I face. I welcomed some of you telling me that it is OK to be annoyed every once in a while. I appreciate that, because no doubt my attitude will slip and I’ll feel annoyed and frustrated again. And it is OK for Cathy to be annoyed, as it is very difficult being the caregiver.

Laura will be picking me up from radiation therapy today.  It will be really good to see her.  She plans to go for a run in the desert while she is at our house.  She really likes running in the desert.  It makes me feel good to know that she is getting something out of this chauffeuring gig, in addition to helping her mom and dad out a great deal. 

Our memory foam topper arrived yesterday and we placed it on our bed last night. I think it helped.  Although I try to sleep only on my back, I find myself trying to roll to one side or another throughout the night. I definitely stop when I roll towards the side where the drainage procedure took place, because it is so sore.  The pillow that I place on the other side, however, doesn’t always stop me from sleeping on that side.  Indeed, I slept on that side off and on throughout the night.  Fortunately my pressure sore was not worse when I got up this morning.

I have a consultative appointment tomorrow morning at Mayo with a physician in their Pain Clinic.  These physicians perform various procedures to eliminate pain.  You may recall that the nerve block procedure I had done in September did not work. The physicians in this clinic offer alternative procedures.  It is definitely worth checking out, as I would like to have minimal pain using considerably less pain medication.  

I am already starting to look forward to the weekend. It will be nice not to have radiation therapy for a couple days.

Thanks for all your entries in the guestbook.  They are much appreciated. Cathy and I really enjoy reading them.  You give us hope, which is very much welcomed.