Surgery

The last procdure...

Monday, June 1st--Surgery Day

On Monday I finally had surgery for the thing that started all of this off--my Gallbladder. If you recall, it was because I was going to have my gallbladder out that they discovered my Leukemia in the first place.

Well--the journey came full circle on June 1st.

At the same time, I had my port taken out, as, I shouldn't need it again.

The surgery was, as I suppose all surgeries are, painless--mainly because of our friend: anesthesia. This time, I didn't even make it to the surgery room before I fell asleep--they said, "This is to relax you," as they gave me the initial injection, and well--I guess I was very relaxed.

The entire thing is done laproscopiically. This means they only make a few small incisions and inflate your abdomen with air (carbon dioxide?) to make it easy to work beneath the skin. (Incidentally they don't push the air out--it just eventually works its way out.)

I woke up a few hours later, the epitome of groggy, in a recovery area. All I really wanted to do was sleep, but after much coaxing and help from my nurse, I was able to drink a little and perform the few required exit tests--walking and peeing. Do those--and they will let you go.

And they did.

The whole thing took most of the day. When I got home, I slept.

Tuesday

Tuesday I was still in a little pain from the surgery.

I had one incision in my chest where they removed my port, and four incisions in my abdomen--three of those down the right side of of my belly, and one in my bellybutton, through which the gallbladder came out. The thing that really surprised me though was that there were no stitches, just a glue called Dermabond that holds the wounds together for about 5-10 days then falls off.

It even allowed me to shower.

Most of Tuesday I felt surprisingly good--other than some pain near the incisions--but by the evening I was feeling the pain more, so I took some of my oxycodone and slept...

Wednesday

And slept...

All I did was sleep-all day.

Thursday

And slept...

I was still not quite right. It was frustrating as everyone had told me that that I should feel great by Friday.

I was not feeling great.

Friday

I was not feeling great by Friday either, but I had appointments with my doctors. My oncologist told me all was well. My ophthalmologist was pleased with the progress the hemorrhages in my eyes were making--they were breaking up.

They still affect my vision but I am sure they will go away eventually.

To the Weekend and Beyond

By the weekend I started feeling a bit better but was still slow to move about. Finally by Monday I was feeling pretty good--not perfect but better. And now, I am almost back up to snuff. I slouch a little as the incisions, or maybe the muscles, beneath them aren't keen on being stretched--but every day I get a little better.

And that--in a nutshell--is that...

With a sigh of relief I can say that I have finally reached the end of the long, windy, procedure-filled road.

Whew...

The Future

And now, I am sure as much to your pleasure as a reader as mine as a subject, there really should be very little more to say about all of this.

Of course I have many more doctor follow-ups. In about 5 weeks, I should be past any restrictions from my surgery. (For that full time I can't lift anything more than 10 pounds or swim). I also have a year's worth of medications to take yet, but all in all--I am super pleased to be where I am.

The worst is behind me.

And the view from here is great!

Maintenance Update

Things have gotten much better.

Since last time...

After my last update, the past few weeks started a little rough with another gall stone attack, but now, overall, things are great. 

Other than the very occasional GI tract issue, I have gotten used to my daily medications. I think I may even be getting used to my weekly one that makes me super sleepy.  I'm a little slow to come up with this simple solution, but I now take it at night so even if I am sleepy, I won't care.

My eye continues to be partially obscured, but I think its getting better. The shape that obscured part of my vision seems to have broken into two shapes now--so hopefully I am on the road to recovery.

Surgery

I have been waiting to write until I have some news, and here it is... I now have my surgery scheduled. Hurray!

I'll be going into the hospital on Monday at 8 AM for a 1:30 AM surgery. I'll be getting my port out, and also my gallbladdder.  It's great to have this scheduled, as I feel like I can't really mend completely until all of this is over. 

Both surgeries are laparoscopic. This means they are minimally invasive, can be done outpatient, and have shorter recovery times. If I recall--I should be up and about at home by Wednesday, and completely back to normal by Friday.

Hair

My hair is even coming back in. 

It seems to have come in in three stages. The first was all white, and is still sort of invisible. After that, two round of dark hairs started up. It's all very thin, and I think the white hairs won't really show until there is thicker dark hair to contrast against. 

Then again the white hair may all fall out--who knows?  

Overall

Overall--things are good! And should just be getting better and better...

Maintenance Begins... (5/2/09-post date)

And I thought this was going to be the easy part...

After the Treatment

So, I was very much looking forward to maintenance. After all, I had already been through the worst... 

• Induction - 26 days in the hospital and a few weeks recovery
• Two Consolidations - only a week in the hospital with a few weeks recovery.

And with that done, my Leukemia was in remission (as verified with that Bone Marrow Biopsy a month ago). 

So on to the beginning of recovery! 

• Maintenance - a year long period of taking drugs that make sure the APL stays gone... 
  

Maintenance Begins

For Maintenance I am taking three (primary) drugs.

• Vesanoid - Four pills twice daily, but, only for two weeks every three months.
  
• Methotrexate (Trexall) - Four pills, once a week
  
• Mercaptopurine - Two pills daily.
  

Well, Vesanoid is an old (and apparently sometimes fatal) friend. But the other two were new. With new drugs come new reactions--and these knocked me out...

Saturday, May 2nd

I got up, had a nice breakfast and tried out my new drugs. It was weird not taking Vesanoid, the miracle "cure-all" drug that makes this Leukemia one of the easiest to treat. 

My daughter has wanted to plant some vegetables, so we went to a local nursery and picked some up to try a little container gardening. I of course took it easy as I was still not quite up to snuff, but we had a nice outing. I was out of energy and stayed in the shade while my wife and daughter planted the plants. 

And it was then time for lunch. By this time I was feeling a little weird--and after lunch I lay down for a nap. 

I napped until dinner, got up, and then slept another 12 hours.

Feeling Poorly

These new drugs sapped me of energy, gumption, enthusiasm and any general feeling of well-being. And it was no better Sunday, or Monday, or Tuesday. They laid me low-the better part of every day was spent in bed either asleep or awake but too tired to be anywhere else.  

The Mercaptopurine targets cells that reproduce often, like blood cells, but that also means your Gastrointestinal tract. So on top of feeling out of sorts in the head, and feeling weak, my stomach was a wreck too. On Tuesday, I even had a near gallbladder attack--it felt like one, but did not last very long so I am not sure it was one--but my insides were a wreck.

And then there is the part where I couldn't (and can't) see that well. It's frustrating as I don't find it that easy to read, or spend time on the computer. I think all of it was made worse mentally by the fact the rest of me was falling a part some of the time too.

I had not felt this overall bad through either of my Consolidations. 

Reading up

So, I read all of my drug sheets. My favorite line is probably...

Contact your doctor immediately if you experience... coma.

Coma--just there in the alphabetical list between chest pain and confusion. Well, if I experience it--someone will be calling--but it won't be me.

Conversations

So, I was feeling so bad, I spent some time trying to research through talking to people too--secretly hoping that someone would say I could just stop taking it. I called my Cigna RN, and she helped a little, but really she said what I was feeling sounded normal. I called my Doctor's office almost every day reporting symptoms, hoping they would reduce my dose or change my regimen.

Everyone just said I should ride it out and that I would get used to it.

I also called work--I wanted to let my manager know that my June 1st return date was too early, but that I hoped to be back my July 1st. Of course -- that all depended on me getting used to these drugs so I could be functional.  My manager, and my company in general has been nothing but helpful and supportive through all of this.  Sometimes you can feel a bit lost in a big company-but its nice to know after so many years standing behind it-they'll stand behind me. We had a great conversation and it meant a lot. And, it got my mind working and wishing i could be solving some problems there.

But I still had to solve my own...

Not Immobile

I don't want you to think I never got out of bed, or never felt OK. I did from time to time.

Usually my mornings were good until a few hours after having taken my pills.  My afternoons were spent napping or watching TV in bed out of my good eye (a friend lent me Buffy the Vampire Slayer -- the whole 7 seasons-- and I am still only in Season One).  Evenings were spent watching more TV--I just didn't have the energy for much else.

Doctor Friday

On Friday I had appointments with my doctors. 

First, I saw my cancer doctor, where they also ran a blood test. My white counts were down to 3.0 from 16.4 a few weeks earlier. Apparently yet another side effect of these drugs is low White Blood counts. They say my counts are not too low, but I still need to talk to them about it as it seems too low for surgery to get my port and gallbladder out.

And then on to my Ophthalmologist. It had been ten days since I saw her, and I thought I would be seeing better by now. She checked my eyes and the hemorrhages are breaking up, but the one in the center of my vision is not yet. So at least that's some good news. :)

Saturday May 9th

I only take the Trexall once a week. So I was not sure how I would feel taking it again. Was all my fatigue just from the daily pills-Mercaptopurine?

Nope--I spent much of Saturday laid up in bed again.

Sunday-Mother's Day

Sunday was Mother's day and I was not going to let all this stop us from going out and celebrating. Jen has been through a lot herself this year, having to take care of me through all of these and still keep everything normal for Anna, and she deserved even some small recognition that I could muster today. Anna and I did the best we could, cooking some (mediocre) pancake, drawing some nice cards for her, and giving her tulips.

But the big question was whether or not we could work out a nice meal out. The place we had reservations for was for Saturday night as they were closed Sunday--and I just was not well enough Saturday. In the end, we have a rain check on a nicer meal, but we had a nice Mother's day lunch out at a pub. I just loaded up on Rolaids and Immodium and all was well.

It was a turning point

Monday - that's today

I woke up early and went for about an hour's walk. I was slow, but methodical, and covered good ground by the end of it. It was great to be moving again after a week spent mostly languishing away in bed and on couches. 

After breakfast I mowed the yard and did a few other small things out there.

And somehow, even though I still felt the effect of the drugs--and still slept some of the afternoon--it was easier to push through them with something to do.

So, I am going to keep trying to do things--push through the problems--and overall hope to do better than I have been.

That's really all there is to do.

Day 8 - 22 (Two weeks of recovery)

I have been resting up at home, and have neglected my blog. Sorry about that! 

So here's your update--covering two weeks of recovery, starting from Monday after Easter.

The First Week Home

Overall, it was really quite nice. Each day I expected to get worse, but thankfully didn't until the end of the week as Thursday was my 41st birthday (a prime number which must have some significance to someone somewhere). I had a nice lo-key birthday celebration with my family, and as you can see in the pic below, I had my cake and ate it too. 

(I never understood why it is considered greedy to want have your cake and eat it too. Isn't that why you want to have your cake in the first place? To eat it?)

And if anyone should wonder if forty is rough, I'll have to say yes--I mean you get cancer, your hair all falls out or turns white, and you spend a lot of time in the hospital. :) 

Forty-one promises to be all uphill though...

Drug Confusion

One little snafu of the week was with my prescriptions. I was running out of the all important Vessanoid on Wednesday, and the local pharmacy said the doctor's office wouldn't let me refill it. After many calls and much running around I finally worked out the story.

Apparently,  my doctor contacted my insurance company and tried to setup some prescriptions for my maintenance period (the "phase" that starts after this, my final consolidation.) I have a "patient advocate" at the insurance company--an RN. She noticed that the dosing seemed way off, and asked their doctor to speak with my doctor. 

Well, as I have said all along, I had been told I would be taking vessanoid for a year. Not true! I take it every 3 months for just two weeks. I also will take two other maintenance drugs--one once a week, and the other every day. Of those, my doctor had given me double the dose of what I should be taking on one of, which took it to unsafe levels. 

Thank goodness for my advocate. 

Meanwhile, my doctor's office had told me none of this before I ran out of Vessanoid. I managed to get the Vessanoid over-nighted in the mail, so I only missed one dose.

The Blood Goes Down, The Blood Goes Up

By Monday of the second week was my low-point for the blood. I had a white cell count of .2 and a 6.6 hemoglobin. I had also managed to develop a significant cough that wracked my body and kept me up nights. On Tuesday I had a transfusion--two bags of Red Blood Cells and one of platelets. I managed to get all this without getting a fever--so all was well--or so I thought.

Vision Trouble

On Wednesday (and maybe it started on Tuesday?) I started having blurry vision. My eyes were sensitive to the light, and it was a little difficult to focus well enough to read. 

By Thursday I called my doctor about it, and Friday when I saw her for my checkup.  

After responding to my compliment about her cheery skirt by telling me she was using it to disguise the fact that she was grouchy because she was going to be on call that weekend, we got down to business. She told me she hates being on call. I had a few questions for her and eventually, we talked about my vision. She said: "People sometimes get blurry vision from chemo, and no one knows why." She then told me it could take up to three weeks to correct itself. 

I had another aspect to my vision problem though that she was not familiar with. If I close my left eye, in my right eye I had a spot on my vision--the kind of thing you might get for a moment if you rub your eyes, but it wouldn't go away--it was blocking my view.  She did not know about this, so suggested I see an Opthalmologist.

That was all on Friday. It was not so debilitating that I couldn't get around obviously, but I had taken to watching TV with one eye closed. On Monday, I saw an Opthalmologist.

Vision Quest

The Opthalmologist was really nice. She shares an office with her brother ("Do you have an eye or heart appointment?") near the hospital.

I have not been to an eye doctor since I was a kid. We began with the ole eye chart test. I started by trying to read it with only my right eye. While a few letters on the left side of the chart were legible, most of them on the right were obscured. If I looked away, I could catch a glimpse of the letters sometimes, and they were clear, but basically something was blocking my vision. When I tried with my left eye, I could read the whole chart without any trouble.

(Incidentally I am writing this with my right eye closed.)

All the gear and resting your head in straps while they shine bright lights in your eyes was sort of new to me. She did a lot of that, and a lot of looking at my eye through lenses. She quickly ruled out cataracts and glaucoma, which was good to hear, and then discovered what it was.

Pre-retinal hemorrhaging.

Sounds scary, no? Apparently when my blood counts were so low, I had blood hemorrhages in my eyes. there are several little hemorrhages in both eyes, but they only obscured my vision in my right eye. The good news, is they should go away on their own as my blood levels improve.

I have an appointment in 10 days to check them though.

How, YOU doin'

At this point, I am doing pretty well--feeling a little stronger every day, and I hope to start some minimal exercising this week--as in walking and maybe a few very light weights to build my strength back up to normal.

I am definitely past the worst of it. Weakness, bad eyesight, etc. can sometimes be frustrating, but I know everything from this point on should just keep getting better.

On Friday, I will get another blood test, and am optimistic that that will mark the end of this consolidation. Once its done, I start maintenance for a year--which basically consists of pills and doctors visits.

At some point, I still need to have my gall bladder out, and get this port out. I'm hoping to do both at the same time.

Thanks for Reading!

If you have made it this far, you have read through a lot! Reading all of this may have been as difficult as going through it. :)  You know how wordy I am...

I really appreciate that you kept up though, and went through this journey with me.  It meant and means a lot that you were interested and willing and I am so pleased I was able to reach out to friends and family this way. It has been a wonderful way for me to document it, process it all, keep myself occupied, and share it with those who care.

I will continue to update this blog occasionally to keep you updated, but, like this post--they may be few and far between as, hopefully, there will be a lot less news.

So, thanks again--stay well--and that, for now, is that...

Days 5-7 (Saturday, Easter Sunday, and Monday)

In the end, it was the end...

The Day Off

Friday afternoon through Saturday was my day off, and I managed to occupy my time without too much trouble. I finally met the doctor I was originally referred to, as he does rounds on weekends and he seemed great. He noted my Hemoglobin was a little down, so he suggested I get a bag of blood on Saturday to bolster me before being discharged. It could delay the time til a transfusion during my next outpatient stint.

So I got some blood Saturday afternoon as well. 

Eating, or a Lack Thereof...

My aversion was real. The pink trays just made me nauseated. If I saw them, smelled them, or even thought of them I wanted to retch. Sometimes some of the food on them was not even that bad--but the smell of the hot food was awful. Fortunately, I ordered some pretzels which helped a lot--I had two bags of them which meant I had 200% of my daily allowance of sodium (which may have actually helped with the chemo induced diarrhea).

Also, my doctor covering for the weekend just decided to put me on nausea medicine full time, so I got Zophran (sp?). 

  

Last Rounds of Chemo

The last rounds of chemo were delivered that night and the next morning. I took them without a hitch. 

Leaving

My nurse on Sunday was a nice guy. He took care of the chemo and worked to get me out of there as fast as possible.  I signed all my discharge papers and packed up. He called  "Transportation" to wheel me out in a wheelchair. I felt perfectly able to walk out on my own, but was willing to wait, at least for awhile...

After 15 minutes I asked if I could walk out on my own.

After 2o minutes I said I really wanted to go--that I could have walked home by then. 

After 25 minutes I said I was giving them 5 more minutes then leaving.

After 30 minutes, I walked out.

Jen met me and I was whisked home. Hurray!

Easter Dinner

I was hungry when I got home and proceeded to eat 3 1/2 pieces of leftover fried chicken from a picnic and 4 pieces of toast. That night Jen made a nice Easter dinner of ham, potato and green beans and I had some of that too. I paid for my gluttony with several unpleasant trips to the bathroom and immodium.

Monday

Went pretty well. I had a visit to my doctor's office set up to start neupogen and get my labs. 

As expected, my counts are dropping and will continue to drop until they hit bottom, probably around this coming weekend.  I will be going for neupogen shots every day, and will see my doctor on Friday. 

And for now--that is that. Rest and recovery.

I am glad to be home!

Day 3-4 (Thurs and Friday)

Again the chemo hit hard...

The Chemo

I am down to my last kind of chemo that is given every other day. They gave it to me at 9 PM and it runs for 3 hours. Then again 12 hours later. Its not supposed to cause nausea, but it did for me. Spent an hour vomiting after they gave it to me at 9--I finally called a nurse and she had meds for me that calmed it. My fault for not calling sooner.

Mostly I sleep. 

Aversion

Forget embracing the mush. I think I have built up a psychological aversion to the pink tray of food. I don't want to open it or think about it. It makes me queasy doing so. So I am sticking to mostly pretzels, ensure, and water.

Done with That

But I am done with all that-and now comes the weird free day. I finished my chemo for Friday, and get nothing until 9 PM Saturday.  

I just sit around.

Day 1- 3 (Tuesday - Thurs)

The chemo is kicking my butt...

Chemo

Chemo started Tuesday, and its Thursday as I write this. Wednesday is a vague blur that I mostly slept, and occasionally vomited, through. It's been really rough this go round, but it does make the time pass.

I did manage to stay up for a whole hour to watch Lost--but it was not easy.

 

Nausea

The chemo caused the nausea, which caused the vomiting. I have barely eaten anything since most food seems repulsive to me at the moment. (A whole lot of that is because much of it is repulsive--even if I felt fine. :) ).  I ate 6 crackers on Wednesday that I threw up, and managed a pancake and half a bowl of rice crispies this morning. Sometimes even talking about food makes me ill.

I am on saline today since I am not drinking anything either. 

I wrote the next two bits on hair and food Tuesday night after my other Tuesday post--back when I had some energy-so they may feel-perky for someone so run down.  I figured I'd get to posting them before now--but have not had the energy to even get to the computer.

Hair Tidbits

There are lots of little curious things about my hair that I can share.

1. Of course they initially said all of my hair would fall out. However only the hair on my head and face did, and then they seemed to change their story that it was different for everyone.
2. My second round of chemo did not seem to cause any additional hair loss.
3. The hair on my head has started to try to make a comeback. If you look in yesterday's photo, you'll notice my scalp is paler than the rest of my head, but part of the reason is that I think there are a lot of little tiny white hairs on the top of my head--hard to say for sure just yet.
4. When they put in my port, the shaved part of my chest. They shaved it symmetrically even though they only worked on one side. As one nurse put it, they shaved it "hiney shaped". (Hair down the center of my chest but each breast is bare.) The hair is VERY slowly growing back.

Food tips

I am back on hospital food again, and I thought I would share this one important hospital tip:

• For your entree, order what is naturally very good when mushy.

You see, when all this food is prepared en masse, and then put in the hospital tray, well the tray lid is sectioned and kept a little warm. Served food that is in a covered dish sits in its own steam and becomes mushier and mushier until you get it. Some things do ok like this--generally these are the things that you can put into your fridge after cooking them and look forward to having again some other time. 

These include things like:

• Baked Pasta (Lasagna, Manicotti, Stuffed Shells)
• Mashed Potatoes

But other things don't do well in this environment, such as:

• Peanut Butter and Jelly Sandwich (which is not good hot anyway)
• Hamburgers
• Cooked Vegetables (that just get mushier)

So, if you should ever find yourself in a hospital (and I hope you don't) go for the stuff that tastes good as leftovers. Embrace the mush and choose mush first!

Encouragement

As always, I want to thank all of you  for your kind words of encouragement through cards, and facebook, etc.  It all helps and is very much appreciated!

The Final Round

I saw my doctor today and she told me the Bone Marrow biopsy came back and all the news is good! 

That's great news of course. This means the treatments have been effective--which is great to hear. It would be rough to go through all of this to only have to go through it again. 

When she first told me the news that I had Leukemia, she said, "You won't appreciate this yet, but you only have to go through two consolidations. Normally you go through three of four." 

She was right. I didn't appreciate it--and now, how I do! Regardless of how rough all this is--it's great to know its the final round. It really is wonderful to be on the home stretch.