Feeling like my old self… although there are new battles ahead

So here we are more than 50% through my treatment. I had blood work done today and my counts were good. I am anemic- but I knew that. But it doesn’t seem to be an issue that my doctors feel need to be addressed with yet another drug. I am feeling really quiet well and I know I have some intense weeks coming up, but right now I am focused on the here and the now.

I’ve been working from home and getting a lot done- and I am going to meetings here and there. I am bummed that I missed a CAEAR Board meeting in DC and an NCQ Steering Committee meeting in DC this week, but I think I have done my share of coast to coast travel over the past few months.

When I was talking to a friend yesterday and mentioned that I am three weeks through treatment, it dawned on me that these three weeks have felt more like three months. This seems to be interminably long.

I knew I was getting my mojo back when I began reading and watching political news again and began getting pissed off and engaged. When I was feeling at my worst, I couldn’t stomach watching anything political- not even the pundits I love like Rachel Maddow or Lawrence O’Donnell. But when my political soul is stirred again- I know I am back! Maybe it was going out to see Kathy Griffin on Sunday night that helped bring back my political moxy, but it feels good to be fired up again.

On a somewhat unrelated issue that is pure vanity, I decided to shave my head again. I had thought that since I wouldn’t be worried about my appearance too much during treatment so I thought I would grow out my hair-knowing that it would look raggedy for a while, but the more I looked at it as the hair began growing out- the sicker it made me look. So I decided to think about my appearance again. I have lost weight and actually that looks good too! I wouldn’t recommend the cancer diet, but I have lost about 25 pounds- which is just about what I needed to lose. My final personal vanity issue is probably very intimate- but what the hell. The radiation is causing me to lose my hair where I am being “radiated” (in other words I am losing hair between my belly button and my upper thighs (not a look I particularly like- but right now I have no interest in anything between my belly button and my upper thigh anyway.

While I am in the middle of this good period, I began to think about the whole course of this treatment. I’ve managed AIDS for long time and had treatment for Hepatitis C, but I don’t think I have ever had a health issue that demands such attention because of the sheer complexity of the treatment and the side effect maintenance. It seems that there are so many moving parts in this treatment and it is a delicate balance indeed.

It took me quite a while to get all of the doctors, etc. in order before I started treatment but know that is all working like clockwork. But it seems that everything I do: the food I eat, the energy I expend, the drugs I take, the care I need to take to ensure I am not exposing myself to other illnesses, the side effect maintenance are inextricably linked. There doesn’t seem to be anything that I do that doesn’t have some effect on something else.

I think that I am happiest about the fact that I seem to be handling this all pretty well. Emotionally I have been handling it very well thanks mostly to an amazing support system. But my body has been through a lot over the past 25 years. I have low T-cells and my liver isn’t perfect. But I seem to be handling this treatment as well as anyone does.

Sunday is Lee’s and my 22nd anniversary. It is also are 12th year with Darwin and our 2nd anniversary as a married couple. It will be a quiet celebration at home, but unlike my birthday- I will be able to enjoy it. The next morning- I start chemo again.

We’re into the second half and I just need to keep my eye on the prize while dealing with it one day at a time.

It’s a good week

So the post chemo week is like a visit to Abu Ghraib. It seems to be extended torture. But now that I am in the second week after chemo- I am human. I’ve been working a lot (albeit mostly from home) and actually made it into the office for a couple of hours and went to a few meetings! My energy level has been very good- of course this is a relative term.

I seem to have managed my bowel issues- which is HUGE! The one little annoyance is that I have been running low grade fevers daily and occasionally they spike up to about 101.5. This concerned me and my doctors so today we did a battery of tests to see if there is any infection going on that we need to address. After the devastation wrought by chemo, my body is like a welcome mat to any germ or infection and there are a few infections that they look for and it is possible that it can lead to sepsis (lovely!). So today we did a battery of tests- blood, urine and x-rays. The good news is that everything came back fine. There is no fluid in my lungs or around my heart, my heart is not enlarged, my liver and other counts are normal. So I am not in any danger. Clearly there is some minor infection causing the fevers- but it is nothing dramatic. So they will put me on a basic antibiotic to kick whatever is going on.

All in all- it is good news and I am feeling well. The other piece of good news is that my next round of chemo does not start this coming Monday the 20th as I had thought. It will begin the following Monday the 27th. So I will have another week of normal life (or the nearest thing one has to normal while going through this).

What is most exciting about this is that Lee’s and my anniversary is on the 26th- so we will be able to have the opportunity to have a nice day! It is a huge gift.

Of course the reason for these few weeks of normal life is so your body can regain its strength before being assaulted again. Delightful!

I assume that the chemo week will be framed by the false steroidal energy that the first chemo week had, but I am going to be very careful. I don’t want to let the false sense of energy do me in, so I will monitor myself carefully. There are a few meeting I need to do that week and I will do my best to be at those meetings- but not much more. I have been forewarned that the second bout of chemo can be more devastating than the first, so I am making plans in case the week of October 4th will be another visit to Abu Ghraib. But who knows- it might not be that bad. One day at a time.

Right now I am relishing this good week and the fact that by the end of this week, I will be half way through this.

As always I am constantly awe struck by the support and affection of my friends, colleagues and family and how profoundly lucky I am.

Post Chemo Week – Coming out of the other side

Wow! This week has been remarkable- and not in a good way. It would be difficult to give a chronological account of the week- since time seemed to blur. There were some hours that were good, even some days that were okay. But there were some days and hours where my body was going though things I never dreamed of in my worst nightmares. This post will be rather graphic- and if you don’t want to read about things like explosive diarrhea I would suggest you not read any further. I did say at the beginning of my blogging about this experience I would live this out loud- that means talking about everything. There were two days that I was so sick; I couldn’t even get to radiation. So I’ll have to tack two radiation treatments on the end of my treatment. They plan on a few cancellations – so I am okay.

First is the good news. My white blood cells and my red blood cells are good. Yesterday I just took my 8th and last post chemo shot of Neupogen which I was taking to sustain my white blood cells. Since I am HIV + and have had historically low T-cells (although undetectable viral load) it was imperative to watch the white cells. Neuopogen has a side effect I had heard about and that creeps up on you- “mild to moderate bone pain”. Now I know what that feels like. Imagine that you borrowed money from a loan shark (a wise guy, not a banker-although these days they are both loan sharks) and you haven’t been able to pay it back and they send Guido to push you to the ground and kick the living daylights out of you. Every bone in your body aches. Thank goodness for Percocet. Every morning I wake up I feel like Guido has given me a going over.

Then there are all of the issues that have to do with bowels. It seems that all cancer treatments wreck havoc on the gut and have effects from diarrhea to constipation. But when you add that anal cancer is right down there where it all happens- it adds even more challenges.

To put it bluntly- my rectum is INCREDIBLY sore. Every time that feces passes through, I want to scream. It feels like someone is taking sand paper and rubbing in on my butt. I told you this would get a bit graphic. I’ve been able to treat it a little and it has gotten better, but the idea of doing a number 2 is like thinking about which level of Dante’s inferno I want to visit.

My birthday on Wednesday was probably the worst day. I had no energy, I was in pain, I was running fevers and after I got back from radiation, I decided that I needed to retreat from the world. The thought of even attempting to make it “a work from home day” bordered on the absurd. I felt miserable most of the day but it was a poignant birthday and I will end this post talking about this because it will end the post on an up note.

I run low grade fevers that occasionally spike up to near 102. But that has becoming less frequent. Chemo on a body that already has low T-cells is an entirely other complication- one that can be apparently very dangerous.

One day last week- and I don’t remember which- I had an attack of explosive diarrhea that was massive. Thank goodness it was in the bathroom, but it was a mess to clean up. I think I am taking out stock in Clorox, baby wipes, sanitary napkins and yes- I will admit it – “Depends”. Yes- every iota of dignity has been stripped by the Big C, or more accurately, the treatment for it.

There are also the mouth sores. I had been warned about them and they are unpleasant to say the least, but I keep a water bottled filled with water that is mixed with salt and baking soda with me at all times and swish a few times an hour. It has made all of the difference.

But the biggest “freak out” for me was what is known as “chemo-brain”. Many patients experience it and I have been too. Apparently your short term memory is compromised by some of the chemicals in the chemo. I think this put me over the edge more than any other possible event. I remember everything, I have an incredible memory and to have it played around with is scary.

Today is Sunday and it seems that I have come out on the other end of the post chemo week. The unfortunate thing is that the week after next is chemo week number 2 and there will be another post chemo week. But I will enjoy this in-between week as much as possible and I hope that the chemo week will once again give me that steroidal energy for that week. I’ll just have to plan that the week afterwards will be pretty useless.

But this brings me back to my birthday this past week. I felt miserable. I didn’t feel sorry for myself- just miserable. Usually celebrations like birthdays at the Allgaier-Hawn household are excuses for a night out at the opera, the ballet, a fine dinner somewhere fabulous or a gourmet delight at home. This year it was none of those things. But what it was about was love. The amount of support and good wishes I received, the phone calls, cards, e-cards, gifts, they were wonderful. But when Lee came into the bedroom with an Entenmanns chocolate cake with candles on it, I cried. It was so simple and so filled with love. How I would get through any of this without him I can’t imagine. As it turns out, our anniversary will be celebrated during the next post chemo week. But again- it is about love.

The weekend after chemo- The first retreat

Friday afternoon they removed my pump for 5 FU and I had been riding a wave of steroidal energy, which collapsed into a pool of sweat, nausea and bowel issues. I was miserable most of Friday night and while Saturday was a bit better –it to was spent in bed doing nothing. I started the neuopgen on Saturday to boost white blood cells but something tells me that I am anemic too- and I probably will have to go on to another supplement.

It seems like the last few days have been about finding the right balance between two competing side effects- constipation and diarrhea. Fun huh?

I keep telling myself that this is one day at a time and each day will have its own challenges. No truer words have ever been uttered.

I know that this is a short post not filled with the playful badinage one expects from me, but I am not feeling very playful. Just thankful for the people in my life.

Day 3 Complete of 30 Treatment Days

I was counting down my time to being cancer free and I have been using the number 35, which is actually wrong on two accounts. 6 weeks of 5 treatment five days a week is 30 not 35, but the actual period of treatment is 42 days. I am opting to count down the days of treatment.

So here we are 10% completed! Is that an optimistic way to look at this or what? That is SO unlike me; I have never in my life been accused of being a Pollyanna.

The first day was a rollercoaster. The radiation treatment was twice as long as the usual treatment is because they had to do a final simulation before doing the actual treatment. It is challenging my control issues and forcing me to explore my inner Zen- or to see if I have one. They want you to completely relax while they manipulate your body on top of a very uncomfortable table. Relaxing while people are moving you around on a hard slab of metal seem a very Buddhist exercise. A new book in the making – “Zen and the Art of Radiation Therapy”? If you move a muscle they have to start the whole bloody process over- and you sure as heck don’t want that.

Then came the chemotherapy.

We had an hour between the two treatments so we drove home to grab a quick bite. I met with the office billing person so they could assure me that they would work everything out as well as possible. My coverage is very good, but there are certain expenses I will have that won’t be cheap, but I knew that. Their goal is to making the billing issues as stress-free as possible.

After that- we met with the nurse practioner who went over the more detailed parts of my chemo. The oncologist had given me the big picture, but she went into the nitty gritty and also over the list of side effects and the list of things to do to mitigate those things.

So we did an IV push of Mytomycin which is this lovely caerulean blue. It was a big syringe and it took about 15 minutes. This was after pumping me up with IV steroids which reduces nausea but has the bonus of giving your lots of energy. We attached the pump for the 5 FU (I love the name of this drug- it is so apropos!) and it started doing its business. About 20 minutes after we got home, the alarm on the pump started to beep. It had misread something, but we needed to trot down to the office to get it taken care of.

Fortunately the chemo nurse and I hit it off GREAT! She went to Cornell Nursing School, her husband went to Cornell Medical School and they have a son who is applying for early acceptance to Cornell undergrad. Thank goodness for the bonds of alma mater.

Day 2 was uneventful. I had a lot of energy and spent the day in my office- all day. I had the energy and it kept my mind off of the enormity of what is going on. But this does bring me to the Planning Council staff and the agency where our program resides- Shanti. I have spoken about both to everyone who will listen; both the Council and Shanti mean a lot to me. But the support of the Council staff, the Council members and virtually every Shanti staff member has been extraordinary. Everyone has offered support- both emotional and practical and it is truly a family.

Today, Day 3, was a very warm day in San Francisco and steroids make me sweat and uncomfortable in the heat and my office is blessed with lots of sun and windows which can have the downside of being very hot when the sun beats in on a warm day. So I decided to do a ½ day in the office and a ½ day working from home. It was a good decision. Living in a world where you can actually do a substantial amount of your work from home is something I didn’t have when I retired from AIDS complications 10 years ago. It makes a huge difference.

I have been experiencing some sweating, including night sweats, partly because of the steroids (which should wear off tomorrow or Friday) and partly because I am pumping some poisonous crap into my body right now.

The energy level has been good- but at night I crash (albeit in a puddle of sweat). The biggest problem right now is constipation which I have started to deal with. The chemo causes it. Later I probably will be blessed with diarrhea thanks to the radiation. Not to put to delicate point on it- my anus is sore! There is also a little anal leakage that has been an issue since the diagnosis. So having constipation with leakage is an odd experience.

The way that this has worked out for my energy level is really fortuitous. It is likely that I will have the crash over the three day weekend. That’s fine with me.

Radiation is at 8:45 AM five days a week, and it is just a few blocks from my office- so I can do radiation, go into my office and calibrate my energy level and see what I can do at the office and if I need to work from home. It is really the perfect situation.

As far as going to meetings I will have in September (no travel, all in San Francisco), I am playing it by ear and making contingency plans should I not feel like I cannot do it.

A number of people have commented that the pace of me coming back from DC on Friday at 12:30 AM and going in to have outpatient surgery later that morning and then going right into treatment and continuing to keep up my work (while being reasonable about what I may or may not be able to accomplish) is remarkable. But it isn’t. Work is helping to sustain me and I understand my own balance in this experience. For me dealing with all of these health challenges is that I don’t want the diseases to own me, I won’t give into them; I will respect their power, but not give into that power.

I have no idea what the next 5 ½ weeks will be like or even what the weeks after that will be like, but I am trying to deal with it a day at a time.

The one thing I can’t wait for is to get unattached from this pump that has become like a 5th limb- more like a carbuncle on my hip. It is annoying and it has made bathing rather difficult. I can take a shower from the waist down, but a sponge bath above my belly. I hate that- I feel grungy and can’t wait to take a full shower. Ah the simple things we take for granted.

More to come….

I have a Port, but not the kind that goes well with Stilton

This morning I woke up at 5 AM after getting back from DC around 12:30 AM so I could be at the hospital for my outpatient procedure by 7 AM. It was a symbolic moment in some ways because today I shifted from pre-treatment to treatment. While I don’t officially begin chemo and radiation until Monday, this morning began the real, tangible actions. It wasn’t a consultation- it was surgery. I went from a couple of months of a very busy schedule that, while not meant to be, was pleasantly a diversion from what the next 6 weeks will be.

First and foremost, I am doing fine. I have been sleeping most of the day because I didn’t sleep much last night and the drugs they gave me were quite nice. It was meant to be “twilight” aesthesia, but because I was so tired- I just went totally out during the procedure.

Yesterday as I was on my way to Dulles airport I had a few moments of panic. Those moments when I went, “Holy sh**, this all starts for real tomorrow.” But those moments were quick and fleeting.

This morning I had a little anxiety just because it was surgery. It was minor surgery, but I had a visceral realization that they were about to open up my chest, put in a foreign object and insert a tube into my vein. Yikes!. That too was a fleeting moment of panic. I now have a little card and a wrist band that identifies me as having a port- a “Power Port” (its brand name). Kind of makes me feel like the bionic man.

The surgical team was wonderful. The anesthesiologist, the surgeon, the 3 nurses, and the two residents all introduced themselves to me and Lee and were very pleasant. My surgeon, who I had met with a couple of weeks ago, admonished Lee that it was important for me to take time to concentrate on my treatment and my health. He said something along the lines that he knew the work I do is intense and important but for the next few weeks, I had better concentrate on my health. He and I had had a similar discussion at our consultation and I had told him that in fact I had a plan and that plan included “clearing the decks” so I could concentrate on my treatment. But he took the opportunity to say it again to Lee. It was very sweet. My whole cancer team knows that I don’t plan on rolling up into a ball for the next few weeks, I will continue to be productive, but the level will be dictated by treatment and listening to what my body is telling me.

So- I have the port. It feels odd. I guess this is how it feels to have an alien growing in your chest. Where is Sigourney Weaver when you need her? I have an ice pack to reduce the swelling, some pain pills but what I have that means the most is Lee.

Simply put- I love him more than I can express. He is such a source of support and is with me every moment that I need him. When we got home I was hungry since I hadn’t been able to eat since midnight- and I wanted comfort food. I got into bed and feel asleep and when I woke up there was what I had asked for when we got home; a bowl of cream of wheat with heavy cream and a mug of hot chocolate. This weekend will be spent quietly and mostly in bed reading and watching TV.

I am in exceptionally good hands with Lee and Darwin (dogs have uncanny nursing skills and I realize he has paws not hands) and I feel like I am in a very good place and I am ready to start treatment on Monday. Barbara, a friend of mine from Florida put it perfectly. “You are one step closer to becoming cancer free.”

Reality- Right around the corner

I am on board a flight to DC. This trip is the last major project I had wanted to complete before my chemo and radiation begins and what led me to choose the 30th of August as the start date.

I was diagnosed in late June and since that time I have spoken at a conference in DC on July 5th, gone to a reception at the White House that President Obama gave for the HIV/AIDS community on July 13th, gone to New York City and New Haven CT to speak at a conference and attend a board meeting from July 28th through August 1st, attended a National Quality Center Community Advisory Board meeting in New York City from August 12th through August 14th, organized an event at San Francisco City Hall to commemorate the 20th anniversary of Congressional passage of Ryan White legislation and to honor the work of the San Francisco HIV Health Services Planning Council on August 18th, and facilitated the Council’s annual full day prioritization and resource allocation summit on August 20th. This week I’ll be at the Ryan White Grantee meeting, speaking at a workshop, and I’ll be doing a few ancillary meetings as well.

Reality is right around the corner. Treatment is about to start. I haven’t been ignoring my diagnosis; on the contrary I have been organizing all the doctors and I have made sure that everything is ready to start on the 30th. Organizing my treatment has been like a part time job and has been, at times, incredibly frustrating. But it has been task driven —- busy work.

Truth be told, all of these activities have kept my mind off of the underlying issue. I have cancer and I have a pretty serious case of anal cancer that needs aggressive treatment.

I don’t think that anything good could have come from my intently thinking about my diagnosis since the end of June; the diversions of work and scheduling doctors and procedures have served a healthy purpose. I’ve been living my life and I haven’t let cancer define it. But cancer and the treatment for it are about to take center stage for the next month and a half.

I am sort of proud of myself. I have accomplished everything I wanted to before treatment and I have been responsible about my healthcare. I really wasn’t sure I could achieve it and do it with appropriate balance, but I did.

But now it is almost here. The port, the pump that I have to have with my morning, noon and night for 4 days at a time as it drips a drug that is related to mustard gas into my blood stream, the six weeks of going in to be radiated every day, the possibility of skin burns, the possibility of mouth sores, the sitting in a chair every day while another toxic drug drips into my body for an hour and a half, the possibility of fatigue, the possibility of — who the hell knows what?

I have appreciated all of the warnings of possible side effects from friends who have either gone through chemo and radiation themselves or who have friends and love ones who have. This information has given me the heads up so I can deal with what might happen proactively.

But the truth is- that everyone has different side effects. I don’t know what mine will be, and while being forewarned allows me to be forearmed, I know that my body will react in its own way. This will be a new adventure indeed.

As I move into this next stage- cancer is going to be taking up a lot of my life. No matter how much I would like it to be in the background, it will be in the foreground for a while. I’ll need to let cancer, or at least the treatment for cancer, call the shots for the next few weeks.

I don’t like it, but that’s the reality. The amount of time I will be able to be in my office, how I celebrate my 53rd birthday and how Lee and I will celebrate our 22nd anniversary will all be predicated upon how my body will react to my treatment.

I’m not very happy about any of this and I don’t like anything about the upcoming 6 weeks, but I know I have to go through it.

I get back on Thursday and Friday I get my port implanted into my chest.
I think that this post will be the last one that will not be about chemo and radiation and how I am coping. The overture is about to end and Act I is about to begin.