I've had to lump these together because I have been recovering from the port precdure, and chemo, and had to fix my computer, because somehow it was getting slower and slower.   The days after the procedure I was pretty tired, I think partly due to recovery from the prodedure, and the chemo still working its magic on me.  They radiologist had me on a restricted activity schedule, so that I wouldn't rupture the groin area.  By Saturday, I was feeling better and able to walk around a bit and my wife of course wanted me to put up Christmas lights.  I actually only got some done, and had to finish on Sunday, the weather was just to cold up here, and I was feeling tired.  Bowel function has been better since Friday on, not diarreah, but my back has been killing me due to that flat bed they had me lying on.

 

I notice that bowel movements come on suddenly now, and can be quite painful if I have to hold it for even a second or two.  I think all the fiber stuff I eat is making me go more, I'll have to make sure I know where the bathroom is when I go anyplace. 

 

I do take more naps, tiredness comes on suddenly, and I find myself just laying down to take a nap, next thing I know its 3 hrs or more later, guess my body needed the rest.

 

Day 13, Nov 28, Mon - Had my blood drawn today, the nurse got a blood return right away, and actually had to have me apply pressure to my chest for about 15 min, because I was bleeding pretty good.  So it seems now the chest port is working.  Lets hope it works tomorrow, or my chemo.  Nurse thought that I should start taking the Coumadin again, especially since the procedure is through. 

 

I have had much experience, dealing with automating business systems and processes, and it always amazed me that 9 times out of 10, poor communication was the problem, not necessarily the business system. 

When I worked on payloads, we were always trying to get a clearer signal by eliminating the noise.  If I  apply that to this situation, the "signal"  in my case is between the doctor and patient, the "noise" is coming from the nurses and their opinions and the other personnel, such as the radiologist, who should be talking with my oncologist, rather than acting on his own.  To get a better "signal" you have to eliminate the "noise".  I will not listen to the nurses, or other doctors, unless they acknowledge that they have cleared this with my oncologist, since lately they are cleary the "noise".

 

Had an appt with my oncologist today, and I asked her of she could help me understand how the dye study of my port somehow turned into a port replacement/port clearing procedure.  She says that she asked for only a study of what was causing my port problem, nothing more.  She spoke with the radiology dept and made that clear.  She was not even aware that they had performed this procedure on me.  She says she has had problems with the radiology dept before.  She says she cannnot do everything around that place, and so she has to delegate, but finds this institution has many problems.  She says at Mayo Clinic where she did her fellowship these things do not happen, but here there are many things that are problematic.  We discuss what could be done if this should happen again, my opinion was that I am not able to make an informed decision when they have me laying on a table, telling me what they are going to do.  This place did it to me before on the day of my colon resection I was informed they were going to remove my gall baldder.  This is not giving the patient their right to make an informed decision.  I explain that if I ever find that what we discussed is not what they decide to perform, that I will get up and walk way.  She agrees.  Also if she thinks that we should make sure that the any other doctor that is performing any procedure ordered by her, has conferred with her, otherwise leave.  I also explain that if the nurses infer any treatment, I will not listen to them, unless they say they have spoken with her. 

 

In the long run, I don't think there is anything malicious going on, except that I notice the oncology nurses seem to put there schedule ahead of my treatment.  They are a small infusion ward, with only 4 chairs, and so consequently they get irritated with me when my port does not work.  Of course this is not something I have control over.  Also in a business sense, I am a paying customer, I do not expect to pay someone who should be providing me a service to tell me their problems.  When someone is paying me do provide a solution for them, I do not go around telling them how I am under staffed, under paid, and over worked, their not paying me to hear my problems, their paying me to solve their problems.  I can sympathize with their predicament, but it is still their problem not mine.  Healthcare is really becoming scary.

 

In the long run, I am not here to fix healthcare, I am here to receive the best possible care I can get.  I do not want to expend anymore energy than I have to, as it takes away from my healing.  And as long as it is working in towards my recovery, I'll be grateful for this.  I post this because this is my log of events, so I can remember, and also so that others may benefit.

Went in for my appt with the radiology dept, to have them do a dye study, to see whats wrong with my port.

They ask me what I am here for, and I show them the order from my oncologist, which says assesment of single lumen PAC, as I understand it a contrast study of my port, where they inject some dye into me.  They have me change into the hospital attire, and then as I am on the table laying down they tell me this will be more than a contrast study, possibly a clearing of the port or a port replacement.  This of course is news to me, and hardly what I would call allowing me my right to make an informed decision.  The radiologist comes in an explains he does all the options, which are checking the port to see if it is blocked, clearing the port if necessary, or replacing the port.  He asks if there was a reason why my port is on the left side of my chest, I tell him I was never asked by the surgeon who performed the procedure.  The radiologist explains that they normally place it on the right side, because anatomicaly it is easier to place the port.  I explain that when they installed my port they punctured my lung, and so I am a little gun shy of having a replacement port put in on my right side.  After explaining that I had only  6 more treatments to go, and that eventually although it may take some time, they usually get my port working, and that I have never missed a treatment, he thinks it is not worth the risk to do a replacement port.

He's not sure what the oncology procedure is, but that if getting  a blood return is whats holding them up they could always get that from my arm, and still infuse the chemo through the port.  He explains that to clear the port he will have to go through my groin, to get to my chest port.  I am thinking that if they had to get to my brain would they go through my feet?  Anyway, he explains they then then try and clear it, sometimes using a balloon to open the port up.  I am not happy about this, but I am here and see no other way at this point, but to have them try and clear the port.  They put me under local anesthesia, and I fall a sleep for most of the procedure.

 

When I awake, they tell me that I cannot move due to some catheter still placed in my groin.  My back is killing me, from laying flat on the table for so long.  They tell me they were still not able to get a blood return from my chest port.  Now I am a little upset, because failure to resolve the plugged port was not something told to me.  I went through this only to find it still doesn't work, well I guess the oncology people will have to deal with it.

 

They now tell me that I instead of the 2 hrs they first told me I had to stay, I have to stay 4 hrs.  About 3 1/2 hrs I ask if I can use the restroom, I explain I have to have a bowel movement.  She suggests I wait, or use a bed pan, I tell her no way I am getting up to use the toilet, she can deal with it or get out of my way (yeah I am being polite here, I was a little more forceful).  She tells me she hopes I dont bleed all over the place as she helps me with the IV bag into the toilet.  Nothing like the positive spirit of nurses around this place to make my day.  Of course I did not bleed, and I could have said something, but I dont have the energy to waste on people like that.  My wife tells me another nurse agreed those bed pans are horrible, she would not like to use them either.

Went in for my blood test today from the lab, which drew blood from my arm.  As usual they had to poke me a few times to find a vein that worked. 

 

Feeling kind that chemo druggy feeling, some bouts with diarreah, but nothing to bad.  Am also a little more nauscious, but I am able to handle it, so I am still not taking any of their meds to combat side-effects.  If I need to I will, but if I can handle it I won't.  That chemo taste in my mouth, combined with the nausea makes it harder to think of something to eat, that won't make me throw up. 

 

The nurse from the intervention radiology called and spoke with my oncologist on Thurs, Nov 17, about having me stop taking the coumadin.  The radiology people do not want me on Coumadin, since excessive bleeding could be a problem, when they perform their procedure.  I am told my oncologist agrees I should stop taking the Coumadin. 

Day One - Once again there was trouble with the chest port, the nurse spent a couple of hours trying to get a blood return.  Because of the difficulty in getting the port going one of the nurses thinks it may be positioned wrong.  The other nurse thinks thats not the case, since they are able to get it going eventually.  There may be some clotting or tissue growing that maybe partially covering the port.  Anyway it made for a very long day, and for the most part I was just tired.  Digestion is slow again, but I am eating, and have had ok bowel function.

The nurse wants me to continue taking the coumadin again, although the oncologist still has not said a word about this. I have been taking it since Sunday night. 

 

Day Two - Slept for most of the day, reading for brief periods, and doing some deep breathing execises.

Digestion is slow, but I am eating more fiber these days, and trying to get in at least one smoothie a day.

No heartburn at least, and I have stopped taking most of the meds they have been prescribed for side effects, since they themselves have side effects.  I have some nausea, and look a little green around the gills, but I took a nap and felt better.  I am also taking my supplements now through the treatment days, where I hadn't been in previous treatments.  Bowel function was a little slow, but no diarreah, I ate some dried plums and it seems to help, bowel function.

 

Nurse from downtown (Radiology) called and wants to look at my port.  Asks me what drugs I am taking, (Its on the computer record), what the problem is  (do they communicate in this place?), and that they may have to replace the port (Puncture my lung again, now way!)  I ask her what they intend to do, before deciding on a port replacement, who is performing the procedure, and are they board certified.  She says they have students perform the procedure, and one of the board certified doctors, will supervise.  I tell them I will not show up, unless they have a board certified Dr. perform the procedure, too may bad experiences downtown.

They will contact my oncologist, and see if I need to go somewhere else.  The nurse calls back and tells me my oncologist is ok with my request, since she knows my past ordeals there.  I ask the nurse to please fax me whatever legal (notice of non-responsibility) forms they want me to sign just before the procedure, she says she will, but I have not recieved it.

 

Day Three - Had the pump removed late today, since we started late on Weds.  I am so glad to be rid of that fanny pack pump.  I hate having things attached to me, but its part of the treatment, so you live with it.

Usually these next days are rough, and although I am very tired, and a nautious, I am able to move around a bit.  When I got there to get my pump removed, we found out they wanted to do a blood test on Monday, and a chest x-ray today.  The oncologist wants to see if the port is mispositioned.  I go to next door, to have my x-ray done, and the radiologist wants to know if  the oncologist needs these today.  I explain that I don't think she is here today, that she wrote the order probably yesterday.  I explain that the oncologist wanted to see the x-rays to see if the port is mispositioned.  Now the radiologist calls the nurse and finds out the oncologist will not be here for the next 2 days. Further at this local facility they cannot put the x-rays on the computer, so the downtown radiology people who may need to see this, will not have these in time.  (Whats going on here!!!)  Lets add this up, I am getting an x-ray to see if the port is malpositioned, but my oncologist will not be here to see it, and the radiology people will not have access to this, so they may have to do their own set of x-rays.  Yup the the lights are on, but whose home?    I realize now that the chemo seems to make more sense than the day to day operations of this place.  I am scheduled for this upcoming Tuesday, to have my chest port looked at, hopefully they won't make a mistake and make me spend Thanksgiving in the hospital.

 

My appetitie is good, but that chemo taste makes it hard to think of foods I might like.  Neuropathy has been mild, and I am getting used to drinking room temperature things.  Last treatment the neuropathy appeared late, and I was very surprised, in fact most of the after effects showed up late last treatment, it was bizzare. 

 

I notice that my muscle strength is diminished, so I am a little shaky these days, also my eyesight seems to be a little worse than usual.  I notice there are more days when I just sit and stare, my wife talks to me, but I cannot answer, I don't have any words, my mind is just blank.  Its a wierd druggy feeling, can't really explain it.  But I feel it more and more with every treatment.

 

Woke up feeling better, did some work for about 3 hrs, and became short of breath, and had to lie down again.  Went out for a couple hrs with a client, and came home and ate, and fell alseep.  The exhaustion is very strong, not quite like the bad day at the office, in fact that seems tame now.  I am hoping for a better day tommorow, I can't help but think about the other people I've seen in the infusion labs, I've seen the look, and I think now I know better what the other part of the chemo feels like now.  Some people have to endure this for much longer, they give me hope.

Unbelievable exhaustion, now I know, what they mean.  Bathroom-digestion problems are being handled by the Omega 3-6-9, digestive enzymes, and probiotics.  Neuropathy also seems to be reduced, still some sensitivity to cold drinks, but my hands only hurt when I wash my hands in cold water or touch things in the freezer, my feet feel ok.  This tiredness is overwhelming, its very hard to think, read, and there is some shortness of breath.  I will have to take this up with the onologist next appt.  I hear this happens, now I know how it feels.

Well I went to sleep for about 3 hrs last night and then stayed up till about  3:30am this morning.  Went to sleep and woke up about 8am.  I had my pump removed at the infusion clinic at 10:30am, and they had difficulty getting a blood return from my chest port, so they added some heperin, and had me lie down, then sit up and wa-la a succesful blood return.  They are putting me on Coumadin (Warfarin), which should thin my blood and avoid some of this clottling activity which has been causing my port problems.  I did find out that they gave me a TPA ( tissue plasminogen activator ) the other day to try and free up the clotting in my chest port.

 

I woke up this morning feeling very sick, and very tired. I took started taking the dexmetasone (steroids), the Oncologist prescribed, which I normally only take for about 3 days, although I thiink the prescription is for about 5 days.  Usually this helps the nausea and so I don't take the Zofram for nausea, unless it the sick feeling continues.  The steroids gets me up and controls the nausea, and helps my appetite, but I am still tired.  Without it I would be layed out today, so it defintely helps.  I got home and took a 4hr nap, then worked a bit, and had dinner (Vegetable soup).  I need to drink more water, but because I have been sleeping so much, I am a bit dehyrdrated.  I did resume bowel function and did have a bit of diarreah, but not too bad.  Its much better to have bowel function than not to, I mean after all, getting rid of toxins is what its about.  I still think the Omega-3-6-9 oils, probiotics, proteolytic enzymes help, but I have been off in taking them because of my constant naps. 

 

The Oncologist mentioned that the Zofram (Anti-nausea) also may make you constipated, so I have been trying to avoid taking it unless I have to.

 

The cold is still hanging around and I am still on Zithromax (5 day, antibiotics), butI think the cold seems to be getting better.  I am still wiped out, but I saw my blood work today, and my red blood cell count, and white blood cell counts and they are all down, so it probably explains my tiredness, and my lower resistance to colds.

 

Intresting that the heartburn was non-existent so far, compared to the last treatment, but the slow digestion is still there, but I think a little better this time.  Neuropathy increased today, maybe due to not enough fluids, I'm not sure.  I read where drinking lots of water helps to prevent damage to your kidneys and bladder, but perhaps since you are eliminating toxins there is less of a build up in side effects from the chemo as well.

I think the cold has made me a little more tired that ususal,  my digestion remains a little slow, but I have been taking my Omega-3-6-9, probiotics, proteolytic enzymes, Goji Juice, lots of water, and have not had any heartburn this time, so far or any real bad bouts on the toilet.  Th neuropathy seems controlled at this point, I feel it less than last time, except when I touch things in the freezer.  My throat still seizes up when I drink really cold drinks, so I have been drinking things mostly at room temperature.  Nausea has been minimal, and my appetite has been normal, although I still have to think about what I might like to eat.  I think the taste in my mouth, from the chemo, still makes it hard to decide on what might taste good.   I have been trying to eat more fruits, thank god they still taste good. 

Well the cold has appeared, had sniffles, and am coughing a bit.  It seems to be settling deep in my chest, so I let the nurses know when I went in for my infusion.  My oncologist thought it was ok to continue, and prescribed Zithromax antibiotics, to prevent any chance of infection. 

 

My chest port had some difficulty again, but cleared after she positioned be in a lying position in the adjustable chair, somehow it seemed to clear it up.  She says they may have to give me a blood thinner next time.  Its odd because normally my blood has always been very thin.  But I guess I'll keep an eye on my platlette count to see how low it is.

 

I slept about an 2 hrs in the infusion chair, and was pretty much just tired from the cold, and of course the chemo.  Went home after and had a big lunch, and went to sleep for another 4 hrs.  Woke up in a sweat and soaked my pillow, I don't think I had a fever, my body temperature sometimes goes up when I sleep.

 

Bowel movements were somewhat soft again, and digestion seems to be slowing again.  I will be taking my fish oil, flax seed oil, CLA, probiotics, and proteolytic enzymes, so we'll see if we can control the diarreah again.  I did have on bowel movement which was diarreah, but I have been sleeping all day and did not do the fish oil pills for most of the day.

 

Having a slight cold adds a little more tiredness, and of course I'm hoping my body's immunity can do its job, it has its work cut out for it this time.  But my appetitie seems ok, and I think I will be able to rest a lot, although I may have some work to attend to.

 

I am adding a sub-lingual glutathione tab to my regimen.  There was a European study which showed promising results in limiting the neuropathy caused by Oxaliplatin, by using an infusion of Glutathione.  Glutathione is normally produced by the body, and suppliments of Glutathione have not shown to be very effective.  My oncologist says the pharmacy here was not able to get Glutathione in an infusional form, so we were not able to try this, instead we went with the Calcium/Magnesium infusion during the treatment, as suggested by the manufacturer of Oxaliplatin.  But I am going to try this sub-lingual form of Glutathione, and at the very worst I maybe just wasting money.  We'll see how this works out.

Feeling normal today, but still a little tired, even my bowel functions are back to normal.  No heartburn either.  I feel like there is a slight cold hanging around, but it has not appeared yet.

 

I went in to have my chest port cleared, since it failed to return blood, it appeared to be plugged.  They used a solution they called TPN tor clear it yesterday, but they did not have enough time to let it sit, usually about an hour to hour and a half.  They only let it sit about 30min yesterday, but today it returned blood just fine.

So I should be ready to go for my chemo infusion tomorrow. (Update: TPN, I think is incorrect, I will have to ask the nurse again what she used to clear my port, I think she tried to snow me on this one.)

 

As usual I was up a little late the night before my infusion, I guess that time I seem normal becomes very valuable to me, and so I'm treasuring those moments  as much as I can.  Since the infusion usually takes about 4 1/2 hrs, I find its better to sleep while its going on, although I only usually sleep for a couple of hrs.  Reading material, or a DVD fills in the rest of the time.

 

I should note that sometimes I catch up on my log later, so I'm going by the treatment day, and what I remember, even though the entry date may say another date.

I woke up this morning and felt like I had been hit by a truck.  I was so tired I was dragging for the whole day.  I saw the oncologist today, and she says she will look at my blood test, which I  am getting today.  But for the most part the tiredness is expected.  But I think I may have just over done it at the 3-day conference, and taxed my body too much.  The mind thinks you can do things like you used to, my body is telling me, I don't think so.  Guess I have to pay more attention.  Bowel function remains ok, but not normal.  At least there is no diarreah.  My joints also feel a lot looser, I can't explain it, but its like I'm a little shakier these days. 

 

My cousin practices spiritual healing, and I did early sessions with him before I started chemo.  I started up my sessions with him tonight, I think it helps, and I would reccomend adding him to anyones treatment plan.  I feel you cannot address your entire treatment, on just medical treatments.  You need to have the mind, body, spirit, nutrition, and physical (exercise) as well, at least for myself I find it helpful.  Of course finding time for all these continues to elude me, but I am gonna make changes, since it is clear that whatever habits may have gotten me to this point, need to change.

But it's not like I was not always somewhat health conscious. So maybe its things like getting enough rest, and reducing stress, and clearing unresloved matters. 

 

My chest port failed today, while they were trying to get my blood tests done.  They couldn't get a blood draw, so I have to go back tomorrow, and they will add some solution into the port, to help disolve whatever is plugging it up (more later, I was just to tired today to be my normal inquisitive self).  Then I will begin my 5th treatment this Weds, Nov 2).  They ended up poking me in my hand (the 2nd time) to find a vein they could draw blood from. 

I spent the whole day in San Francisco, commuting from Concord, and then driving back late last night to Sacramento.  I was extremely tired from the 3 days spent at the conference, and delirious by the time I got home.  I guess I'm not as strong as I thought I was, and not getting the normal amount of rest, really affected me.  I think I will have to listen to my bdoy more, and not over due things the way I'm used to.  Since cancer is a breakdown in my immune system, I often wonder how I may have contributed in not supporting my immune system in doing its job better.  Of course, sometimes its hard to tell how much is environmental as well.  If you look up Carcinogens in google, you'll realize you'd almost have to live in a bubble to be carcinogen free.  But I guess I'd at least try of doing a better job in helping my immune system do its job, after all it has its workter  cut out.

 

Bowel function, not normal, but no diarreah, just soft.  Thinning hair continues, and of course extreme tiredness.

My appetitie is good, and I am actually at my heaviest so far in my treatment, at 197!  My oncologist thinks this is better than losing weight. 

Well I feeling good today, digestion is still somewhat slow, but better.  No diarreah, but not quite a normal bowel movement either, this chemo really messes up my digestion.  I am in San Francisco, rushing around town today and tommorow, so I will be off my routine diet, somewhat.  Thank god its not too cold here today.  I still am a bit tired, but I probably won't get a chance to take a nap either, so we'll see how I do.  I forgot my fish oil caps, and probiotics, so I may have to find at least some yogurt or something, and some fresh fruit.  I had some heartburn today again, so that one is getting to be a constant problem.  Hard to imagine this feeling good will soon go away when I start my next treatment next week...yuck.

Well digestion still seems a bit slow, but no diarreah.  I feel much better today (yesterday), more like normal, although I was still a little tired.  I took a 2 1/2hr nap, and felt better.  I am still taking my flax, fish oil, probiotics, digestive enzymes.   No heartburn, but I have been very gas orietned.  I think it might be those papaya tabs, I eat too many of them.  They really must get to work, because I sound like I need a muffler!