TheMosmillers.org

Blood Tested

I had my blood re-checked this afternoon for the beta HCG marker as well as another that I think is just being double checked. I likely will not get any results from this until my appointment next Friday at Hopkins. That's a wait I could stand to avoid, but that's the way it goes.

A Dubious but Positive Milestone

I realized late today that I'm more distracted by pain in my back as opposed to pain around the surgical incision. I think that means things are progressing more or less as they should. I think I am running into a partial CFS block when it comes to the sitting up for long periods, but I look forward to a much-needed post-surgery osteopathic treatment next Tuesday which should go a long way towards fixing the back issue and righting the ship energy-wise too.

I enjoyed a reasonably packed day of Olympic coverage today and am hoping for key US wins in both hockey and curling tomorrow. I have really gotten into this curling thing. If I had a greater flexibility in terms of choosing activities in which I participate, I would seriously consider looking for a local place I could learn this sport. I think there might be some activity in Glen Burnie, much to my amazement.

Dressing Removed

I had my appointment today as planned with Dr. Rogers at Hopkins. I was scheduled for 3:00 and got in at about 4:30. The wait was pretty brutal given that I only sit up for short periods right now. We just walked in the door at about 6:20. Now for the update.

The dressing was removed as planned, which was essentially just a peeling of the plastic bandage. I could have done this part at home, but this gave Dr. Rogers the chance to look over the incision, which is healing normally. I also received a copy of the biopsy but of course had already read it and posted it here. I was hoping to learn more about this but I am coming out with exactly the same information with which I went in unfortunately. To review, I have testicular cancer of the seminoma type and only of that type.

So, what's next? I get followup bloodwork next Thursday and a CT scan on the 3rd of March to determine whether or not the relevant beta HCG marker is back to normal. The CT scan will be reviewed at a followup appointment on the same day. I am also being scheduled to see a radiation oncologist in the interim so that I can be briefed on the process of radiation therapy, which, if the marker has returned to normal, will progress thereafter for 2 to 3 weeks as often as every day or as few as several times per week. If my marker has not returned to normal we will then have to explore the possibility of chemotherapy or further surgery, as that would be an indication that the tumor had metastasized into an area like the lungs or brain.

My efforts to obtain even the limited information presented here could be likened to the pulling of teeth, so I have little sense of what is anticipated regarding my beta HCG level. I get a slight indication that a positive marker would at this time be unexpected, but at the same time the words really and very high have been used each time the marker level has been discussed. (For the record, my beta HCG level is 290. It should be undetectable.) It turned out that the tumor size was largely irrelevant, but I do not know about marker levels. If any of you have experience with this, please give me some indication. It's a frightening thing to have a really high marker indicated. I wish this guy was a bit more informative and up-front with his information, that's for sure.

I am totally out of gas, but I am also really proud of myself, because I had a moment just after the appointment that, to use a tired sports metaphor, you might call "gut check time," and I passed it at a time that I think almost everyone would fail. This surgery has me stretched thinner than a wire (my legs are shaking as I write this), and the appointments and attached waits are much akin to repeated blows to the abdomen while stretched out on a rack, but I am going to find enough to get through all of the followup treatments, even if that means I have to go to Hopkins every day. It's just going to happen. All of you are helping me through it.

Thank you.

It's Been a Week

I was able to push a little more today and walk around the yard and pier some. Everything I do involving sitting up straight and walking tires me out a ton still, but I'm trying to do a bit more each day anyway. Tomorrow is my appointment at Hopkins to have the dressing removed (it's ranch), so here's hoping I don't have to wait much before getting in for that.

If you're interested in reading the pathology file I received, click here. Maybe one of you can even explain it better, though I will likely find out everything I need to know tomorrow.

Double Dose of Good News

Well, the past hour has been rather eventful. Firstly and most importantly, Dr. Rowe (my CFS doc at Hopkins) got back to me with a preliminary report that suggests that the cancer may have been limited just to the right testis, which would mean it would be gone now. This is just an early indication and not thorough like the blood testing and CT scans will be, but it's a nice start.

Secondly, the blog has been updated to the latest version. This means everything is more stable now and we should have access to some more convenient features. I will get to investigating the new stuff and updating the pictures on the help page to match the new look when I am able, which won't be just yet. You can post and comment all you like from this point on. Ooh, I just found one handy new feature - you can assign multiple categories from a dropdown list just below the "Primary Category" section on the blog posting screen. That is a lot simpler than the old method, which I doubt any of you knew about anyway. Score one for confusion! Actually, the story of this upgrade is a really good one but I can't get into it here. If you are curious, send me an email and I'll explain.

Talk to you all soon.

Olympic Hockey = Great

I have never been a fan of the NHL at all, but I absolutely love hockey when it comes time for the winter Olympics. It's just a better game. The ice is wider, fighting is simply nonexistant, and the level of play is always at a fever pitch. I still wish the US team didn't always have so much contraversy surrounding it, but I'm still gonna watch.

On the health front, I'm still getting by. I'm maybe slightly better each day. Nothing crazy but it's not all that bad either. I've had visitors a lot of days and that has been great too. I go to get the dressing removed from the surgery wound on Friday, but I'm sure I'll be posting about that when the time comes. I'm worried about the wait, because it killed me the last time and now I'm having trouble sitting up for extended periods on top.

One more thing - you may not be able to post comments or full posts to the site over the next night or two. If that happens do not be surprised, and just try again the next day. It'll be back to spec, hopefully with some improvements, shortly.

Ooh, Curling

I'm doing about the same today as I have been. I seem to be in some physical pain here though, almost as if I'd been through some kind of surgery or something. Hehe. I'm currently checking out curling Olympic competition on one of the NBC satellite networks. It's kind of interesting, particularly when you have no better options available.

I continue to receive a ton of support from every possible angle, and once again I thank you for it. I've been worn down so much over the past ten years that it has gotten kinda easy to think I have been on my own and without a lot of hope. This situation has cleaned that thought out of my mind and then some.

Plugging Along

The last day and a half have been fairly uneventful. I'm still mainly just sitting in a recliner all day, occasionally talking to folks on the phone and eating. I hurt, but not excessively. My mind is still not entirely on track, so I have no particularly useful insights or witticisms to add today, but hopefully that will return over the course of the week.

I thank you all again for your support. Your calls and comments are really helping me feel great right now. I'd particularly like to thank my friend Mei-Ling for quietly taking off work and driving hours in order to visit on surgery day, and for outfitting me with everything I could possibly need in recovery short of scuba gear. You really know how to make a guy feel loved.

Andy's surgery

Hi, Everyone,

Andy came through his surgery well, despite an episode of tachycardia. Because of that, he is staying tonight, which is a good thing for him, in #209 Marburg. Probably, he will be discharged tomorrow morning, but we are not certain at this time. The tumor was large, so the incision had to be extended a few inches, but the doctor is satisfied that it went well. The results of the 2nd tumor marker, (blood work from Wednesday),will not be available until Monday, but that is not relevant just now anyway. In summary, he has about 5 weeks to recover before a decision is made as to the next step. Your prayers are greatly appreciated and are felt most strongly by all of us. Andy's friend Mei Ling Johnson and her father spent the day with us and Mei finally got to see him for a few minutes before they had to leave, which was good medicine.

What wonderful friends/family all of you are! You cannot imagine how effective your caring has been in our lives. It certainly is more healing than any drugs or treatments and more pleasant, as well. God bless all of you as you continue to keep Andy in your prayers. He is in good spirits and full of trust in God.

Carol

It's Official

We went in for blood-work and an appointment with urologist Craig Rogers today at 12:15. An hour or so later my blood was drawn and we got upstairs. After another three hours I got to see the doc, who had already scheduled me for surgery tomorrow morning. We finally got to the car at 5pm after more blood tests were completed, and I am writing this, exhausted, after basically just walking in the door.

The blood test results today confirmed that the tumor in my right testis is cancerous, though the type is yet to be determined officially. After an extremely brief examination, Dr. Rogers walked us through the steps of this process and outlined some details of the surgical procedure. An incision will be made above the affected region somewhere on the right of my groin and the cancerous testis will be removed through it. The procedure is often outpatient, but I think I'm going to be staying a day due to my CFS problems. I requested that consideration and I think it's likely to happen. If I stay over I'll probably be in the Marburg building, but I'm not certain of anything right now.

After the surgery, I'll go back in a week to have the dressing removed, and I won't know anything conclusive about whether or not the problem has spread until a month after the procedure, at which point I will have further blood-work to re-test the presence of the tumor marker(s). If my blood is clear, I'll just be observed. If not, I'll have to get chemotherapy and possibly other treatments and things unfold.

So, here's where I am...

The recovery rate for testicular cancer is about 99%, so that is good. That said, I am still extremely concerned about making a recovery from surgery, and further concerned by the prospect of treatments that, by their very nature, wear down the body even more. I am also angry that I had to go through a roughly five hour process today just to have my blood drawn and have a fairly brief consult. I feel I get absolutely no consideration as a person with CFS going through something like this, because no one at any point ever made any attempt to expedite the process, have me get the blood-work done at the same time as my other blood draws, or anything else. I further feel that this consult could have essentially taken place over the phone, legal requirements aside. The position in which I was placed today is much the same as requiring a wheelchair-bound patient to walk up 5 flights of steps to get testing done, then back down for the appointment, then back up again for more testing. I am as tired now I think as I was after the wedding I described on my blog in mid-October, and I have to go in for surgery tomorrow morning at 8:30am.

I was afraid I was going to just totally lose it coming out of Hopkins today, and I did briefly, but as I have found on countless prior occasions, God granted me just enough to get through. After my consultation I was sent back downstairs for what I assume amounts to pre-surgical blood testing, and my technician, a mostly bald, middle-aged African American man, was incredibly friendly and conversational at a time that it just had to happen. I would like to submit his name to the Hospital just to tell them how important it was, but I don't know if I can get that information or not. We talked a little about life, he brought up politics, and by the time I left I was much better equipped to handle the car ride home and the evening still ahead.

So, it's quarter of seven now as I wrap this up. Please pray for me. I am really scared about getting through the recovery from this surgery due to my energy level right now. When I get this tired I often get "regular sick" as I tend to call it, and that would be just horrendous at a time like this. Please pray that I'll get through it, and please also pray that this will be the end of it. Please also do what you can to keep me busy without a big energy requirement attached, as I have found it nigh-impossible to think about anything other than this since I received first word on Thursday. Somehow I am going to get through this surgery and come out shining. My will to live is not remotely reduced despite my physical condition, and I know I'll get just enough at each step to be ok.

I thank you all profusely for your comments over the past day or two. I have commented in return, but you might not realize that if you didn't check for yourself. You can call the house (410) 255-2308 for any information you need. Our answering machine is misleading and generic, but rest assured it is us. If you leave a number I'm sure my folks will get back to you as quickly as they are able.

Goodnight everybody.

Important Health News

Before you read any further, I ask you all to read this article, written by Christine Miserandino in 2003. She has done a beautiful job of describing a vague concept to most, and hope you can get some understanding from the reading. Now to the meat of this message. It is not particularly kid-friendly, so I have provided you with the option to continue reading or not at your discretion.

As you may or may not be aware, a few weeks ago, I visited a new doctor in Reston, VA to try a new treatment approach for Chronic Fatigue Syndrome and Neurally Mediated Hypotension. I received a routine physical as part of my visit, and was sent for a sonogram due to an enlarged right testis. On Thursday (the 2nd of February) I learned that the sonogram showed possible signs of testicular cancer. I must see a specialist this Wednesday the 8th and in all likelihood have it removed in short order. At that point they will complete a biopsy and I will learn more about what is going on.

For those of you interested in the technical, here is the report:

The right testicle is enlarged measuring approximately 7 x 4 x 4 cm and is near completely replaced by mass with heterogeneous predominantly hypoechoic echotexture and diffuse increased vascularity. Appearance is consistent with testicular neoplasm, probably seminoma. The right epididymis, left testicle and epididymis appeared normal.

Before I found out about all of this I was exhausted. I have been struggling to research and cook healthy recipes following a particular dietary regimen, trying to learn about occupational therapy, exploring how to properly fix the little house next door so that I might move in, pursuing copyright process for my card line, rebuilding my small-weight and stationary biking routines, and attempting to start driving again as well as getting a hobby involving about eight people off the ground. It is fair to say that I have used up all of my "spoons" for the last few months and then some, and now I have to face recovery from surgery and undoubtedly a whole battery of tests to follow.

But somehow I'm going to make it. Whenever something really nasty has come up in the past, I've always instinctively tapped into a sort of "emergency energy reserve," and I have no doubt I will do the same in this situation. While I face a sort of undefined fear for the future, I have no regrets or reservations about the way I have lived to date, and that helps immensely. At present I must simply wait until a final judgment is given, but once this happens I will pursue all necessary measures relentlessly as I do with everything else in my life. Faith and self-confidence make a powerful duo even in the worst of times.

So, if you don't mind, say a prayer for me tonight that I might have enough "spoons" in-hand to get through all of this ok, and possibly another that, after more comprehensive testing is complete, everything might turn out to be not such a big deal afterall.

Thanks everybody.