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.

Second Consolidation, Day 1 ( Tuesday 4/7)

Back in the saddle again...

Monday's Doctor Visit

So, on Monday, 4/6 I saw my doctor again. Labs were drawn in her office and everything looked like it was on the right track--that is all my blood was recovering nicely.

Which means its time once again to knock it all back down.

The plan is to get chemo for five days and then go on the outpatient-until-you-get-a-fever program. I should be able to go home Easter Sunday.

Smooth and Efficient

I was to check in on Tuesday, April 7th. Now, if you have been following this at all--check in is hardly smooth. One time, I waited 5 hours after checking in just to get a room and even then waited a day before anything happened.

But this was different. They called me at 9 in the morning and said they were ready for me to check in. I checked in quickly, but in the past they then had to call a transporter to take me to my destination. (one time that was around the corner--I waited 15 minutes to go around the corner.) 

But this time they said I could walk. So--I went up to the 10th floor, where the rooms are dated and dull and had a great surprise!

New Room 

The last time I stayed here I got perhaps the worst room ever. Nothing worked and parts of cabinetry was broken. It was the pits. However, I knew that the area where I first stayed, lo the many weeks ago, had been redone. I was optimistic that I would get one of the redone rooms.

And I did!

The re-done rooms were opened yesterday, and in fact I am the inaugural patient.

But, the room I got, was the same room I had when I checked in the first time. It was so much nicer redone, but it was still tiny.  With five other rooms open, it did seem a bit weird I was put in the smallest.

Thankfully Jen encouraged me to ask about the other rooms. I joked with the nurses about cashing in my frequent stay reward points for a room upgrade. They offered me the biggest room (which is REALLY big) but I felt that was a little greedy. I went with a nice sized room (for the hospital) which is perfect for me.  Its great--it overlooks the same lake as the Bone Marrow Transplant floor, but now from 7 floors higher. Great views, freshly painted and redone room--I'm really lucky to have it.  

Jen got me some coffee and a muffin as I settled in.

A Needle in Every Port

My nurse accessed my port--still weird to have someone press a needle into your chest.

I figure you all are due a picture, so here I am in my new room with my port accessed...

The Pelvic Bone is connected to the Pain Bone

Before getting my chemo I had a Bone Marrow Biopsy.

Owwww!

The Lab doctor came up to give it. Basically they stick a needle into your pelvic bone just to the left and down from the small of your back.  The doctor said for some it hurts more and others less, mainly based on how strong the bones are. For an old woman, with soft bones, she might not react.

I am however middle aged man with strong bones, and maybe a bit of a pain-wimp (she said my reaction was not unusual and to next time ask my main doctor for some pain medication first). Wow did it hurt.  First they numb the area with something that really hurts--they do that three times--and it hurts each time. Then they drive a needle into your pelvic bone while you are gripping the bed with all your might and screaming into your pillow as a nurse rubs your arm and says take long slow breaths. And then they keep saying "go to a happy place," and "I'm sorry I'm causing you discomfort," and "Its almost over." (That seems like the kind of thing you shouldn't need to say so many times if it really is almost over.)

Glad that's over.

(Apparently one patient bit a nurse during this.)

The rest of Tuesday...

Well--there will be more to report from Tuesday as I should start my chemo later. But I will update you all in another post.

Days 21-28 (Tuesday - Sunday - the "good" week)

All's well...

The Good Week

So, these days were fairly uneventful, but wonderful. I had a great time being at home, but while I was supposedly in my good week, I know some of my counts besides my white blood count were low--so it still felt like I was recuperating.

Generally it manifested itself as low energy.

In fact Thursday, I think I was only awake for meals, and then crawled back into bed.

Visitors

I really didn't even have many visitors or do much as I was nervous of catching something before going into the hospital that would then keep me there. I'm hoping it is me being hyper-vigilant and not just paranoid, but fingers are crossed that I have another good round.

On Monday, my brother inlaw's family came to stay for a night or too from across the country. We had a wonderful dinner and evening. eve though I did not get to see them for long, it was great to see them and I am sorry I did not have more time.

But on Monday, I also went to the doctor, which lead to me heading back to the hospital Tuesday for my final round of chem--hurray!