Cancer- The newest challenge in my fight with HIV

My last radiation treatment ended a week ago this past Monday and I have been slowly getting back to my regularly scheduled life. Well frankly I am attempting to get back into the office more often, I am still a shut-in at night and haven’t done anything socially other than a Senior Management Team lunch at work (I don’t think that counts though).

On Monday I had my regular blood work done and everything was good. My white blood count, red blood count and platelets were all in the normal range. I was impressed with my resilience. It was only 2 weeks earlier that I had a white blood cell count of 1 and had to have a transfusion to boost up my red blood cells. I am still fatigued a good amount of the time and if I overdo it- I feel not just tired but sick, so I am really trying to listen to what my body is telling me.

The biggest treat has been food. I started eating vegetables this week! It has been ages- and I cannot express how wonderful it was to have my first salad again! It was heaven! Experiences like this remind you how much the simple things like lettuce are to you!

I am still unable to walk more than a couple of blocks without getting really winded, but I think I just need to build up my stamina – slowly.

There is also the weight. I lost 40 pounds over the course of treatment- which was approximately 20% of my body weight. I probably could have afforded to lose 20 lbs, but 40 pounds was way too much. Most of my clothes fit like a teenager wearing his dad’s clothes. I do have some pants and jackets from various weight periods- so I can wear some of the clothes I bought when I went back to work after pneumocystis pneumonia in 1999! A good WASP never throws any clothes out—- unless they are totally moth eaten; it was fortuitous.

The next few weeks will be devoted to slowly continuing my recovery. The radiation caused some burning on my butt and my genitals and it that is slowly healing- but it is still painful. I’ll be happy when I am completely healed in that area.

The question I am getting most from folks is – “So when do you have a check up to find out how successful treatment has been?” Clearly it is an obvious question and one that comes from concern, but the question irritates me. I know it is coming from a good place, but right now I just want a couple of weeks not thinking about this while I get my health back. I don’t want to think about it right now.

So here for everyone is the answer to that question. My oncologist told me on Monday that we would be doing an exam in early December. Since it includes a rectal exam, they want to give me some time to heal (THANK YOU!) so the exam is not excruciating. Both the oncologist and the surgeon who specializes in dysplasia who originally diagnosed my cancer will be doing exams. The surgeon does not have an easy hand and his exams are rough in the best of circumstances. But my oncologist is very optimistic about my prognosis. Anal cancer is very responsive to treatment and most people have good outcomes. I mentioned to him that I was a little concerned because my tumor was large (all my doctors were scaring me when I was diagnosed when they would push me to have treatment rights away by citing the size of my tumor) and he responded that they were very aggressive with my treatment because of that so he was still very optimistic. By the way- no one was more aware than I about the aggressiveness of my treatment.

So- I am getting myself back to normal. I don’t want to think about my exams in December until I have to. I want to enjoy Thanksgiving and I want to start getting my total life back- social, cultural as well as work. A little blissful ignorance right now is just what the doctor has ordered.

I decided that this entry into my blog would be better done as a video….

So here we are on October 20th- incidentally my father’s 80th birthday. I started my journey into the world of cancer treatment on August 27th, the day after I returned from a trip to DC to have my port implanted and we were off to the races with chemo and radiation on August 30th. My final radiation treatment is Monday October 25th. It is a little less than 2 months. It has seemed in many ways like 2 years. It has been a rollercoaster of physical illness and emotions.

I’ve managed to keep most of my life intact. I’ve been able to work- mostly from home and I have managed to not let cancer completely take over my life- although it has taken a substantial part of my life over these past two months. I missed a few meetings I would have loved to have attended in DC and in Chicago and if I can just whine for a moment- I had to give up going to a meeting on HIV and Aging at the White House. I’ve been to a number of meetings at the White House over the past year (didn’t that sound obnoxious?), but this meeting is special. HIV and Aging is an issue that I have devoted an enormous amount of time and energy to over the past year. Fortunately I have a very smart man who knows this issue very well going in my stead. Instead I’ll be speaking at a local event on HIV and Aging the day after the White House meeting. Yes that is important too – so I’ll stop my whining about this.

Tomorrow I have a transfusion to help combat my anemia. And the anemia is pretty intense. I spent the afternoon today in my office which was great- although it was clear that towards the end of a meeting I had at the end of the day that I was feeling a more than just a little punk. I took a cab home, but walking up the 6 steps from the sidewalk to our front door did me in. I couldn’t catch my breath. The transfusion should help me breathe but also give me a little energy. My white blood cell count is VERY slowly creeping up from its low of 1 to a whopping 1.9. My platelets have increased from 44 to 55 (still damned low). When they took blood yesterday to type and cross match so I could have a safe transfusion, it took a while for my blood to clot and it left me with quite a bruise.

A bruise seems trite considering everything else that I’ve been through over the past 2 months. But at this point- I have to say that I am close to being snippy and complaining about everything. But the biggest complaint I have- is the pain I experience when I go to the bathroom (number 2). The radiation has burnt my anus and every time I go, it’s like I have knives cutting into me- the irritation is just out of control. Sometimes it is so bad that I’ve cried while I have been sitting on the toilet.

Of course there is food- I am so tired of bland food and no vegetables. I can’t wait to sink my teeth into a nice ripe heirloom tomato. I dream about it, I covet Lee’s salads when we have dinner.

It will take a few weeks after my treatment is done before I am able to be back to normal. A couple of very dear friend have offered to “break my fast” by hosting a wonderful dinner in mid-November.

I’ll devote another one of my blog entries to the people in my life that have provided so much support. As this chapter of my battle with cancer concludes, I think I will be writing a few more entries to this blog that describe the big and little things that have kept me going and have meant more to me than I can really describe. My 53rd birthday and my 22nd anniversary with Lee both occurred during this challenging period. I would rather have celebrated these milestones differently, but these two dates were special this year- they were life affirming and love affirming. The love and the people in one’s life are what matter most. I know we all know that, but this experience has allowed me to know it in my heart every day.

Yeah- I can whine about the experience, I can bitch about what a difficult ordeal this has been, but really this has taught me more about myself than any experience I have had. Of course I would rather have learned these things without the cancer, but that isn’t what happened.

I hate cancer, it is horrible. But I need to get something out of it other than its horror. I think I have.

This week is a milestone in my therapy for anal cancer; it ends. My final radiation treatment is on Friday. I am still feeling the effects of the last chemo which ended a little more than two weeks ago. Nothing that I have ever experienced has been as rough as that last treatment and its aftermath. Still I am spiking fevers twice a day, have occasional nausea, a fair amount of fatigue- but it is a vast improvement.

I’ve calculated that my best time of day is the afternoon, so as I transition from working more from home to working more from my office, I’ll start off with afternoons in the office.

I know that I will not be completely over the effects of treatment for a couple of weeks after I finish up on Friday, but I do expect that each day will be an improvement.

I’m all excited about filling my schedule up with various meetings and travel again-but I will be approaching it gingerly. After all- I woke up this morning around 4:30 with a 100 degree fever followed by the nausea and the dry heaves. So clearly life is not back to normal.

But what comes next? I see my oncologist on Tuesday. Ideally my blood work will show a vast improvement from the white blood cell count of 1 that I had (it was followed by a count of 1.4 a few days later). We’ll talk about these pesky fevers. I hope they end soon. I don’t know if I’ll see him again for a while. I hope I don’t.

My radiation oncologist told me that they’ll give me a 3 week break before they look to see how successful this has been. In the back of my mind, I knew that we would have to assess the success of treatment, but hearing it and knowing that it would be right around the corner posed a new question.

What if it hasn’t been fully successful? From what I know, most people have very good results from treatment and stay cancer free. But my radiation oncologist likes to remind me that my tumor was quite significant. Thanks for the reminder.

I am not about to future trip too much on “what if’s” here, but coming off of this draining treatment, I have no desire to go back and repeat it. Of course that sort of decision would have grave consequences. I know many other cancer survivors have been through much worse and I feel a little guilty thinking that I might call it a day if I had to make that decision. Again- I don’t know, every day is different and truly you take one day at a time. Today I don’t think I could repeat this, but who knows what I’d do if I have to.

Right now, I’ll concentrate on getting my world back to normal and celebrate the end of the treatment. I’ll deal with what comes next when we get there.

Yes this is the news I got on Friday. My platelets are lower than low and I am slightly anemic. But that White Blood cell count of 1- that was not good news. White blood cells (WBCs), or leukocytes are cells of the immune system involved in defending the body against both infectious disease and foreign materials. They are all produced and derived from a multipotent cell in the bone marrow known as a hematopoietic stem cell. Even though I am on n Neupogen, the WBC count is abysmal.

We are in the territory where if you sneeze, you might be encouraged to go into the hospital. I personally think if my WBC is low, the last place I want to be is that Petrie dish of germs- a hospital. The nurse practitioner at the oncologist’s office told me that late Thrsday. Friday and this weekend is probably when my body is at its most vulnerable. Just about anything could develop into a serious condition. We’ve added Cipro to my drugs- a wide spectrum antibiotic to be proactive and if I develop a fever (and I am having fevers) that cannot be lowered by a basic dose of Tylenol I must find the nearest emergency room for IV antibiotics. I am assured that things will get better as the week progresses. But right now- I am keeping the world art arm’s length.

I decided to name that one White Blood Cell (I do know that this is a measure and I have more than 1 white blood cell floating around my body- but I like the imagery). The cell’s name is Albert. As Prince Consort Albert and Queen Victoria were quite prolific. I need my bone marrow to follow Albert’s lead fathering a bunch of new WBC.

These last couple of weeks that I am facing of radiation can’t be over soon enough. There is remarkable pain every time I have a bowel movement. I want my normal back. I can never really know from day to day how much I can get done. This past week, even though I was working from home, I realized that had to take a day and not let work interfere. I hated it. I am so glad I can work from home- but I miss my office and interacting with the great people I work with.

I sort of surprised myself this week. I opened my email and there was an invitation to go to a meeting on HIV and Aging at the White House in late October. HIV and Aging has been one of my pet projects for quite a while and it is an issue I know like the back of my hand and for which I care passionately. I know that I would have been able to offer so much to this meeting and learn so much from others. But I also knew that flying from San Francisco to Washington for a half day meeting just as I am getting over the assault that has been waged on my body was a very bad idea- so I arranged for a colleague to go in my stead. Normally giving up an invitation to the White House would be unthinkable, but I didn’t give it a second thought. A good life lesson- I don’t have to be the one to do everything.

One thing that this period of working out of the office has done is that it has provided some prospective for me on how me and my colleagues do our work. Interestingly enough my treatment came at a time when my work really needs to pivot from its “work as usual” and begin to really incorporate a world that has a National AIDS Strategy and that is moving towards healthcare reform. Working at home and having a little distance has been important in giving me the freedom to look at things a little more creatively. I feel inspired and my mind is bubbling with ideas. EXCITING!

Food is inspiring me too. I have a few great passions- work, Lee, music, literature and FOOD! I am a foodie and it is like hell on earth not to be able to eat anything but the blandest most boring of foods. Tired of bananas, rice, applesauce and toast (aka the BRAT diet), I haven’t had a vegetable in over a month. I salivate when I see a simple salad of lettuce and tomato.- just the lettuce is enough to make me swoon.

Yesterday we were driving down the street and I could smell the burgers being charbroiled in one place, the fries being fried, the smell of Vietnamese food wafting from another place. And then I smelled Barbeque.

I can’t seem to walk down the street without knowing what a neighbor is cooking for dinner or what is on the menu of the local bistro just by sniffing the air.

So this week has been about, an immune system shot to hell, avoiding the doctors from putting me in the hospital to protect my system, doing a lot of strategic thinking for work (my luck it will all be some fantasy concocted by chemo brain) and FOOD.

Well I think that it is the home stretch. I just finished my second and last week of chemo (I had chemo in week 1 and 5) and I have 11 radiation treatments left. They will do a CT scan on Monday and that will dictate if they need to tack on a few more treatments (I sure hope not!).

This round of chemo was a little less arduous than the first one- mostly because I didn’t have any mouth sores this time. Last time I had some- not nearly as bad as what I have heard from others.

I am anticipating that next week will be a “low” week. It seems that post chemo weeks are not easy because it is when your body is at its weakest and most vulnerable. But again- it could be different. I will start Neuopogen again tomorrow to ensure that my white blood cell counts don’t drop too low.

Yesterday was a difficult day- I had fatigue like you couldn’t believe. I came home after radiation and was on a conference call- but I only could get through half the conference call without needing to go to sleep. I think I was a useful voice for the time I was on the call, but I knew that my effectiveness was quickly waning.

It has been a luxury to be able to handle my job mostly from home. Again- I have to thank my staff for helping me manage our work with me out of the office more than not. This morning I went into the office for an hour to get some paperwork done that couldn’t be handled over the internet. While I was there I got frustrated because I haven’t been able to be there that much in the past month. I am one of those rare birds that actually loves my office (I have a nice one- great windows, nice size, brick walls, lots of plants and pictures) and I like the interaction that you don’t get as much when you work from home). I am really chomping at the bit to be able to be back in that office 40 hours a week. I am tired of looking at the computer at my house.

I have also missed much of the work that is not directly part of my job but inform my job. My work with various coalitions, boards and task forces are what has been furthest away on the back burner, but today I started re-populating my calendar with these groups too. Boy it felt good!

I won’t be pushing myself. I believe that I have been very good about listening to my body and not pushing myself and I think that I have surprised many of the people in my life who have wondered if I wouldn’t push myself.

So as I approach the home stretch I am beginning to get my life back to normal. I’ll play it as it comes along, but it feels so good to have some light at the end of the tunnel- I can’t tell you!

For the last couple of months my anal cancer has dominated Lee’s and my life but more so since I started treatment on August 30th. Lee finished radiation for prostate cancer back in February and has been on Lupron- a hormone treatment since that time. The course of treatment is for Lee to have a Lupron shot every four months for the next year and a half. It seemed as if the worst of the side effects of the Lupron are pretty frequent and severe hot flashes. But yesterday we found out that he has experienced a side effect more profound- bone weakness – osteopenia. He had a bone density test this week and they found osteopenia in the lumbar spine and also in the neck of the femur. So- now Lee has to start Fosamax along with his Calcium and Vitamin D supplements.

Suddenly Lee’s illness reminded us that it is there. It’s been easy to concentrate on the current most dramatic issue- my current treatment of radiation and chemo and their vast array of side effects because it has been in our face.

But my heart sunk when I heard that Lee had a new challenge. His bones are a little brittle and if he fell down he could do some significant damage.

As we talked last night about this we both realized that the health condition of the other is of more concern to each of us than our own. This is what our loves is like. We certainly don’t downplay our own issues, but our hearts are filled with the needs of the other.

It sure would be nice if neither of us had to deal with any of these issues but that isn’t the case. We both have some significant health issues going on but since Lee’s diagnosis with prostate cancer they have politely danced with one another –letting one take the lead while the other followed. Yesterday they both wanted to take the lead; our cancers collided and both demand some attention.

Tomorrow is our 22nd anniversary. I’d much rather be packing up a car with Darwin and luggage and going to our favorite getaway- The Stanford Inn in Mendocino. But that is not in the cards. What is in the cards is taking care of one another and being with one another and loving one another. That’s always the case, but this year it seems a bit more poignant. Our love sustains us in ways I never ever could have imagined. I don’t think we needed prostate and anal cancer to know this, but these two diseases have certainly shown us how much strength we draw from one another.

Sunday is a day to rejoice in our love and Monday we will both resume our battles- I will start my second round of chemo and Lee will begin Fosamax- and we will hold each other as we sustain these battles and get through them with grace and determination.

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.

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.

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.