support Blood Cancer Research at Department of Defense

If you would like to help support blood cancer research — please consider sending a letter to your congressperson urging support of the establishment of a $10 million blood cancer research program at the Department of Defense. The Leukemia and Lymphoma Society has an easy to use internet form you can use, or better yet, you can send a real letter (you know, with a Forever stamp on real paper and all that).

We need better cures for the blood cancers — the blood cancers include the various leukemias, non-Hodgkin’s lymphoma, Hodgkin’s Disease, and myeloma.

Just to give you an example — the current front-line treatment for Hodgkin’s Disease is the ABVD chemotherapy regimen. It only cures about 75% of people, and of the 25% not cured with ABVD or a similar regimen, half of those people can’t be cured with an even more severe chemo regimen and a stem cell transplant. So of the 8,000 people diagnosed with Hodgkin’s Disease every year, 1,000 or so will die. Many more suffer from treatment related side effects from the harshness of the drugs used in ABVD or in the harsher regimens.

Moreover, ABVD was first developed all the way back in the 1970s. In cancer terms, that’s ancient history. We need more up to date and better treatments — and of course not just for Hodgkin’s Disease, but for the other blood cancers as well, most of which have much lower success and cure rates than Hodgkin’s Disease.

Further, because the blood cancers have to be treated systemically (that’s why chemotherapy is used so much in their treatment), drugs developed will probably also benefit other people with a variety of different kinds of cancer.

So, if you will, please consider sending a letter asking your member of Congress to support blood cancer research. I know the blood cancers aren’t as popular as some other kinds of cancer (we don’t have an entire month dedicated to us for example and you won’t find our various colored ribbons adorning products in the store), so we need all the help we can get.

If you do send a letter, you have my sincere thanks.

reflections on a year with cancer

Over on my homepage, I wrote an essay, Reflections on a Year Running Through Cancer. It is a rather raw, but incredibly honest and truthful look at chemotherapy, mainly from a runner’s perspective.

Some of you have been here reading along loyally the whole time, some of you may be making your first visit here today to my blog. I am leaving my Hodgkin’s Disease posts in-tact here as a diary of my experience. However, if you would like to read my reasoned and thought out reflections on the whole cancer experience from diagnosis to remission, feel free to read the essay.

ports

Warning, am bored, am still a little sick, have digital camera, need to entertain self.

This is a sort of tongue in cheek look at ports.  If you’d like to read a more serious post describing ports, please visit Ports Revisited.  If you keep reading here, you’re going to be subjected to my own unique brand of gallows humor.  Just a warning.

This post is solely Hodgkin’s Disease / cancer related; if you want to skip down to the Civil War stuff, go to the Civil War posts and enjoy the second post about ……. the history of Hodgkin’s Disease. haha. Actually Hodgkin was alive during the Civil War, there’s a tenuous connection. Ok. If you’re still here, you’re reading a post about cancer ……

Since I’m bored, I decided to write about my port.

No, unfortunately I’m not talking about Admiralty law. The law of the high seas. You know. Arrrrgggggghhhhhh. Pirates! Didn’t you read the whole “I’m talking about cancer” disclaimer above? Don’t you know I make it a practice not to talk about the practice of law even though I’m a lawyer? I’m talking about a mediport for chemotherapy. (Sorry about so many cancer-related posts this week. These things run in streaks, you know?)

People keep asking me about my port — mainly people starting or going through chemotherapy, ¹ but also people who are just curious. People seem to be more curious about the port than anything else (I even find lots of people searching about them arrive here through random searches of Google or Yahoo). So … in the interest of hopefully cutting down on how many emails I get about ports (ok, I’m kidding, I love hearing from readers even if it is about ports) AND BECAUSE I LIKE HELPING PEOPLE :) … Here’s what I can tell you. As always, your mileage may vary.

What does it look like?

All right, for the morbidly curious or for those who really want to know because they are considering getting one … I got tired of the questions, mustered up my courage, and took a picture of Victor. By the way, I did name my port. Victor. As in I love the smell of napalm in the morning … Smells like … VICTORY. (Or the death of thousands of Reed-Sternberg cells. Same difference.)

(Any doubt that this is my port can be dispelled by noting the copy of “Gray Fox” among other Civil War titles in the background on the shelves.)

This is what the port looks like all hooked up for chemo or any other infusion. A port can be used not only to deliver chemo, but for routine blood draws and even to just give you nice drugs like fluids. When it is not hooked up, it looks like a little bump underneath the skin about the size of a nickel with a scar above it. That’s it.

(Generally, your port is only hooked up like this for an infusion or for a test. I had to have a PET scan following some blood work, and to avoid two needle sticks, I told them to leave the port in — which is why I have it accessed at home.)

Here is a close up of my chest port scar. It’s located about an inch below my collarbone on the left side of my chest (usually ports go on the right; I had too much supraclavicular and chest lymphadenopathy going on in the right side).

OK, now let me let you in on some secrets about the port. The stuff your doctors may or may not tell you but I think are important from a patient’s perspective.

(You may not want to continue if you don’t like gallows humor. I like gallows humor very much. And if I’m not employing it, chances are I’m REALLY sick, so take it as a good sign, not a bad.)

1. Get a power port!

Not just because it sounds so much cooler when you strut around chemo, pulling your IV pole behind you …. “My port’s a POWER PORT.” Actually you want a power port if possible because they are really much more useful. This is the type of power port the Cleveland Clinic gave me.

A power port comes in handy because it can be used for CT scans. CT scans use a special pump to inject the dye that can destroy or damage a regular port. A power port is specially designed to be used for CT scans.

2. They make two incisions.

Getting a port is usually an out-patient surgery. A general surgeon or a vascular surgeon can put it in (mine was done by a vascular surgeon). They will give you drugs to go to sleep or you can go hardcore with just local anesthesia and bug the surgeon like I did. (My surgeon was so cool.) The surgery took about half an hour.

The surgeon makes an incision to put the port in on your chest, then he makes a smaller incision near the neck to tunnel the catheter. (The tunneling felt FREAKY) I have a scar on my chest but no scar in my neck, though if you look very carefully and know what to look for, you can see the line running up in my neck vein.

Pain wise … I was awake. The liodocaine (the local anesthetic) burns and stings. Other than that, you mainly feel like someone is tugging and pulling at you. Scale of 1-10 with 10 being please kill me now, the port surgery was about a 2-3.

Visibly, unless you’re showing off your chest, no one should know you have a port unless they know something about them and then who cares? My scar is hidden when I wear a sports bra, so even then you can’t see it. Good job, Doc. :)

3. Needles?

Yeah. There are still needles. They use a special type of needle to access a port. ² You do get stabbed, except there is no need to hunt for a vein and rather than getting stuck in your arm, you get stuck in your chest. By the way, stabbing a port is called “accessing it.” Nice euphemism, but it just means stabbing.

Your chest has less nerve endings, so the stabbing isn’t close to as bad, especially since they almost never ever miss. Plus you can put cream on it to numb it before you go get stabbed if you really are afraid of needles (I never used the cream so I dunno how well it works). Also, there is no cumulative damage to your arm, hand, or other veins.

4. Don’t expect everyone to know what to do with a port.

Unfortunately while any good cancer or chemotherapy center will know what to do with a port, don’t be surprised if nurses or techs in other areas don’t know how to access it. Don’t be surprised if you even hear “what’s a port” and be sure to warn the x-ray people that it’s there so they don’t flip out about the weird thing in your chest.

Also, it’s a good idea to carry your port card (basically just a card that says you have a mediport) because it can set off medal detectors, though usually only REALLY sensitive ones (I’ve had no problem at the airport with mine).

5. But using it at least for chemo will save your veins …

Certain chemo drugs, including many used to treat Hodgkin’s, can literally burn you inside out. And if the IV leaks, you’ll end up with a painful problem. The port saves you a lot of that problem with ruining your veins, plus if your doctor is like mine, he will love to get your blood as often as possible. (Hematologist is medical speak for vampire. I’m positive.)

6. I forget it’s there. But you do gotta keep it flushed.

Seriously, I am a little leery about touching the spot, but most of the time I don’t even think about my port. You can’t really feel it or anything like that.

When you’re out of treatment, you have to get your port accessed and flushed every six weeks. It takes like five minutes, but it something to consider in keeping your port long-term. I’m kind of attached to mine (cue laugh track), but Dr. S is too conservative to let me take it out short of 2 years anyway.

Doctors seem to have different “rules” on when you can have your port removed. My doctor insists on remission for two years. Your mileage may vary.

7. Badge of Honor

When I see someone with a port scar (sometimes they are higher on the chest than mine for example or the scar is bigger for some reason) or pick up on the neck catheter, I think ah there goes another chemo warrior, a survivor like me. Seriously.

8. Sometimes your doc will attack your arms anyway.

Sometimes for various reasons, you doctor will have to get blood drawn peripherally anyway. (For example, if there’s something wrong with the port or he suspects an infection in it … or for certain tests, or because you said something mean and he’s mad at you and trying to make you life miserable … you do know I’m kidding about that last one right?).

9. It doesn’t save you from shots.

Yup, Neulasta (white cell booster) and Arnasep (red cell booster) seem to be given as shots, so you’re still getting stabbed for those. The port just reduces the stabbings somewhat. Basically anything you can use an IV for, the port can be used for.
10. Having a port can be fun.

A confession. One time I was goofing around with one of my local running friends and we told the rest of a group (who didn’t know I had cancer) that I had been abducted by aliens. When they guffawed, I showed them the scar and said that was the tracking device. You should have watched their jaws drop. (OK, so you guys all know I have a good sense of gallows humor! This proves it!)

More information on ports: Ports Revisited.

1. I wish no one ever had to go through chemotherapy again ever. [↩]
2. It’s called a Huber Needle, if you really want to know. [↩]

A Brief History of Mr. Hodgkin and His Horrible Disease

(I am sticking this in the Civil War category, although it has almost nothing to do with the Civil War. It’s very much a history related post, however.)

There seems to be something a bit ironic about a student of history being diagnosed with a type of cancer with as long and as interesting a history as Hodgkin’s Disease. Being a history buff afflicted with this particular malignancy, I thought it might be interesting to give … drum roll … a brief history of both Dr. Hodgkin and his horrible disease.

(You know, my first interest was medical school — maybe you’ve seen my website on Civil War medicine. But desire and interest and actual talent are different things, so I ended up a lawyer. Still anatomy in particular fascinates me so I enjoyed flipping through some of the really disgusting pictures I found on the web that Hodgkin included in his books.)

Dr. Thomas Hodgkin

Hodgkin’s Disease is one of the best known medical eponyms. The fellow who’s name got attached to this relatively rare¹ cancer especially known for attacking younger people² was named Thomas Hodgkin. Hodgkin was born in to a Quaker family in Middlesex, England on August 17, 1798. In 1819, he entered medical school at St. Thomas’s and Guy’s Medical School (affiliated today with King’s College in London). In 1823, he earned his M.D. Two years later, Dr. Hodgkin was appointed lecturer in morbid anatomy and curator of the Pathology Museum at Guy’s Hospital Medical School.

Physically, Hodgkin was dark haired, with a slight and wiry build. He had a hot temper, but was greatly appreciated as a lecturer. Hodgkin’s passion seems to have been pathology. In 1829, Hodgkin published a work that became a classic in pathology, The Morbid Anatomy of Serous and Mucous Membranes. This work focused on unexpected intra-thoracic and intra-abdominal tumors and how cancer spread.

In 1832, Dr. Hodgkin described the disease that now bears his name in a paper entitled On Some Morbid Appearances of the Absorbent Glands and Spleen. The paper was published in the journal of the Medical and Chirurgical Society in London. The disease would be rediscovered in 1865 — right as the Civil War ended — by Dr. Samuel Wilks who recognized Hodgkin’s work and named the disease after him in a paper entitled Cases of enlargement of the lymphatic glands and spleen, (or, Hodgkin’s disease) with remarks.

Hodgkin was one of the early advocates of preventive medicine, publishing On the Means of Promoting and Preserving Health in 1841.

Although the most brilliant pathologist of his day, Hodgkin was an abject failure in business. After staying up all night caring for a very rich patient, Hodgkin received a blank check for his work. He filled in the blank with 10 pounds, then added insult to injury by saying that the patient didn’t seem to be able to afford more. Many of his friends were reluctant to ask him to consult on their cases because he would refuse to charge them.

Hodgkin was a social progressive. He opposed slavery, advocated for reforms in medical education, and founded the the British and Foreign Aborigines Protection Society. His liberal views along with his hot temper made him enemies in the medical profession.

Dr. Hodgkin died of a terrible illness sadly familiar to many Civil War soldiers — dysentery — on April 5, 1866 in Jaffa, Palestine. His grave reads: “Here rests the body of Thomas Hodgkin M.D. of Bedford Square, London. A man distinguished alike for scientific attainments, medical skills and self-sacrificing philanthropy.”

Hodgkin’s Disease - The Early Years

Dr. Hodgkin was the first to note that Hodgkin’s Disease seemed to form in the intra-thoracic region and would spread through contiguous lymph node chains. He also noted that involvement of the spleen seemed a symptom of advanced disease.

Dr. Hodgkin also recognized that the “father of microscopical anatomy,” Marcelle Malpighi published the first actual recorded description of Hodgkin’s disease in his paper De viscerum structuru exercitatio anatomica in the year 1666. Hodgkin’s Disease was not the first cancer discovered,³ but it was among the first and one of the first to be accurately described.

Hodgkin only examined his disease grossly; he did not undertake to use the primitive microscopes of the day to explore the tissue further. As previously mentioned, a year before his death, Dr. Wilks assigned Hodgkin’s name to the disease. Hodgkin’s Disease proved to be interesting because it was difficult to classify — was it an infection? a cancer? an inflammatory process? The disease additionally attracted much attention and infamy due to it’s frequency in young adults.

Several pathologists who followed Hodgkin and Wilks did examine biopsies of Hodgkin’s Disease under the microscope, but it was Dorthy Reed (1874-1964), a fellow at Johns Hopkins, who first classified the unusual giant cells unique to Hodgkin’s Disease. Dr. Reed failed to recognize that they represented a neoplasm, however, thinking they were inflammatory. The unique giant cells that make up Hodgkin’s Disease are today known as Reed-Sternberg cells (Dr. Carl Sternberg (1872-1935) had also done work describing them independently in Germany in 1898).

Pathologists were eventually able to tie the giant Reed-Sternberg cells⁴ to the malignant process. Hodgkin’s Disease is a cancer,⁵ sometimes called Hodgkin’s Lymphoma. ⁶

Reed-Sternberg cells are interesting because they only make up 1 to 2% of a Hodgkin’s Disease tumor. Hodgkin’s Disease is the only malignancy where the size of the masses aren’t a result of the number of cancerous cells. ⁷ (This is one reason why there is so much inflammation with Hodgkin’s Disease and often scar tissue).

In 1925, Hodgkin’s Disease, Non-Hodgkin’s Lymphoma, and the leukemias were finally differentiated officially as different diseases.

Hodgkin’s Disease: The First Curable Cancer

Although early pathologists did not recognize that Hodgkin’s Disease was a malignancy, it’s ability to kill was well known. Ninety percent of people with Hodgkin’s Disease would die within three years time; almost all would die within five years.

Through the early 20th century, doctors experimented with using radiation to try and control Hodgkin’s Disease. They had limited success. They began to then experiment with nitrogen mustard. Now my military readers are probably asking mustard? Isn’t that the stuff that was so terrible and killed so many in WWI? Yes. Ironically, the development of the nitrogen mustard drug used in Hodgkin’s disease stemmed from the use of mustard compounds during World War I and from a terrible explosion during World War II in Bari, Italy that exposed servicemen to toxic effects. The Bari incident showed that nitrogen mustard could cause suppression of the bone marrow and of the lymphatic system. By the mid-1940s, doctors were beginning to control Hodgkin’s Disease and shrink the tumors.

The big breakthrough came in the middle 1960s. By 1964, doctors had come up with a combination chemotherapy regimen that utilized the mustard known as MOPP. MOPP consists of cyclophosphamide, vincristine, methotrexate, and prednisone.

The current staging system was also set up by the mid-1960s. The Ann Arbor Staging for Lymphomas also applies to Hodgkin’s Disease. Stage is closely associated with prognosis. The stages for lymphoma are:

• Stage I indicates that the cancer is located in a single region, usually one lymph node and the surrounding area. Stage I often will not have outward symptoms.
• Stage II indicates that the cancer is located in two separate regions, an affected lymph node or organ within the lymphatic system and a second affected area, and that both affected areas are confined to one side of the diaphragm - that is, both are above the diaphragm, or both are below the diaphragm.
• Stage III indicates that the cancer has spread to both sides of the diaphragm, including one organ or area near the lymph nodes or the spleen.
• Stage IV indicates diffuse or disseminated involvement of one or more extralymphatic organs, including any involvement of the liver, bone marrow, or nodular involvement of the lungs.

To this letters are often appended:

• A or B: the absence of constitutional (B-type) symptoms is denoted by adding an “A” to the stage; the presence is denoted by adding a “B” to the stage. The B symptoms include night sweats, fevers, and weight loss of 10% of more. Many symptoms associated with Hodgkin’s Disease (itching, pain on drinking alcohol) are not official B-symptoms.
• E: is used if the disease is “extranodal” or has spread from lymph nodes to adjacent tissue.
• X: is used if the largest deposit is >10 cm large (”bulky disease”), or whether the mediastinum is wider than 1/3 of the chest on x-ray.
• S: is used if the disease has spread to the spleen.

(So if you assigned your author all the different letters that applied to her case, she would have Stage III-AEXS Hodgkin’s Disease.)

By the way there are also four known sub-types of Classical Hodgkin’s Disease:

• lymphocyte predominance (approximately 5% of cases)
• nodular sclerosis (approximately 70%)
• mixed cellularity (approximately 20%)
• lymphocyte depletion (5%)

(Your author had the NS sub-type.)

By 1967, the results from MOPP were coming in and they were astounding: an 81% complete remission rate. In 1968, Adriamycin ⁸ became available for the first-time and in 1972 Dacarbazine ⁹ was approved for use. Because MOPP caused severe side effects (including sterility and severe suppression of the bone marrow leading to secondary leukemias), in 1972-73 a group from Italy led by Bonadonna came up with the current “gold standard” for Hodgkin’s Disease: ABVD Chemotherapy. ABVD combined a vinca-alkaloid known as Vinblastine ¹⁰ (similar to Vincristine in MOPP), an anti-tumor antibiotic called Bleomycin, and Adriamycin, and Dacarbazine. In head to head trials, ABVD proved not only less toxic, but also provided superior rates of cure.

The last major step in treating Hodgkin’s Disease came in 1992 when a German group came up with a new regimen for highest risk patients known as BEACOPP. Along with the Stanford V regimen (a combination chemotherapy and radiation regimen), these two treatments are now sometimes used in place of ABVD in advanced disease.

With modern chemotherapy, sometimes combined with radiation to areas of disease, about 80% of patients with Hodgkin’s Disease can today be cured.

As you would expect, Hodgkin’s Disease is still an evolving field, especially in terms of treating patients who have relapsed disease. Much of the work currently involves effective treatments for Hodgkin’s Disease that reoccurs despite first-line therapies. Also, there has been focus on trying to predict which patients are most likely to relapse. The use of radiation remains an issue as does attempting to lessen the toxicities from chemotherapy.

A Few Famous Hodgkin’s Disease Survivors You’ve Probably heard of

• Paul Allen
• Mario Lemieux
• Arlen Specter
• and a host of wonderful people you’ve never heard of, but are just as important, and just as valuable

So there you have it — a brief history of Dr. Hodgkin and his disease.¹¹

1. The incidence of Hodgkin’s Disease is about 3 cases per 100,000 people per year, and it accounts for less than 1 percent of all cases of cancer in the United States. The American Cancer Society states: “The American Cancer Society estimates that in 2007 there will be about 8,190 new cases of Hodgkin disease in this country. And about 1,070 people will die of the disease. Because of better treatment, death rates have fallen by more than 60% since the early 1970s.” [↩]
2. Hodgkin’s has a biomodal distribution; it is most often seen in people aged 15 to 34 or over the age of 60. In young adults, it is the most common kind of cancer. [↩]
3. Cancer is an ancient disease. Bone remains of mummies have revealed growths suggestive of bone cancer. The Edwin Smith Papyrus found in Egypt that dates back to 1600 BC actually describes 8 cases of tumors or ulcers of the breast that were treated by cauterization, with a tool called “the fire drill.” The writing explains that there was, “no treatment.” [↩]
4. R-S cells are the major thing that differentiate Hodgkin’s Disease from non-Hodgkin’s Lymphoma. The R-S cell is very large and often has more than one large nuclei. [↩]
5. Hippocrates used the terms carcinos and carcinoma to describe non-ulcer forming and ulcer-forming tumors. He used the word that referred to a crab because crab the disease often presented with finger-like spreading projections from a cancer called to mind the shape of a crab. [↩]
6. A lymphoma is a cancer of the lymphatic system, a set of interconnected organs and tissues that helps the body fight diseases and infections. There are two major types, the much more common Non-Hodgkin’s Lymphomas and Hodgkin’s Disease. Connected along the thin network of vessels of the lymph system are groups of small, bean shaped and sized organs called lymph nodes. Lymph nodes are found in the neck, chest, armpits, abdomen, and groin. The lymphatic system also includes the tonsils, thymus, spleen, and bone marrow. [↩]
7. Most of the Hodgkin’s Disease mass consists of benign inflammatory cells including small T lymphocytes, histiocytes, plasma cells, eosinophils, and neutrophils. The inflammation is produced by cytokines which are in turn produced by the tumor cells. [↩]
8. Adriamycin is the red drug. It is used for many different kinds of cancers. It’s generic name is doxorubicin. Adriamycin is in the class of chemo drugs known as Anthracyclines. [↩]
9. Dacarbazine is also known by it’s brand name, DTIC. Dacarbazine is an alkylating antineoplastic agent. It is used mainly now for Hodgkin’s Disease and for certain kinds of melanoma. [↩]
10. Vinblastine is a mitotic inhibitor. It derives from the perwinkle plant. [↩]
11. The World Health Organization in 2001 tried to officially name Hodgkin’s Disease, Hodgkin’s Lymphoma. Personally, I think Hodgkin’s Disease sounds better and my doc uses the term “Disease”, so I am going to keep referring to it as Hodgkin’s Disease. [↩]

grateful

As a cancer patient, I am grateful that kind, smart, funny, caring people choose to become oncologists, chemo nurses, or to otherwise work in the field of oncology. Yes, this is their job, yes they are compensated for the work that they do. But I’m still grateful that my medical team chose one of the most difficult (if not the most difficult) areas of medicine — intellectually and emotionally — in which to specialize. If you want to make a lot of money or just earn prestige, there are a lot easier ways to go about it than working in a rigorous field like oncology. I don’t know how people can work in oncology, but I am grateful there are so many good people in the field.

That’s all. :)

beautiful, biohazardous, Hodge-less Jenny!

Same picture as a few days ago. Except it is with the deepest sense of happiness and gratitude that I can tell you that I look healthy because I basically am healthy!

Jenny lives, Jenny is only slightly more biohazardous than she was when you last saw her, ¹ Jenny thrives!

OK, maybe not quite. My PET scan lit up in only one spot ² — my vocal cords and larynx. In other words …. all of this worry was over just a stinking oddly presenting upper respiratory infection.

Congratulations, Jenny, you are the proud owner of a bad case of laryngitis. You don’t need a stem cell transplant that would have a low chance of success in someone like you with messed up lungs anyway, and you’re not going to imminently die from some other secondary form of cancer. Right now you’re clean.

Irony. After days and days of not feeling all that sick, I woke up this morning with a very sore throat (can barely swallow) and I can’t talk. I still have a fever and I still feel sick to my stomach. And my side mysteriously still hurts over my liver.

I’ve never been happy to have an upper respiratory infection before. I want to get my appetite back and shake this fever so I can celebrate — go for a long run and eat a pint of Chunky Monkey ice cream!

While not a religious person, I cannot help but think that a Hand Mightier Than Armies played a role. (That and all the miles run and ice cream eaten in my honor by my running friends, and of course the good wishes from my other friends. Perhaps when we all pull together for something, we can sometimes alter the cosmic fabric just enough to matter.)

Score one for the good guys!

1. PET scans are a nuclear medicine test — that means they require a radioactive tracer injection. The guy with the Geiger counter was doing a safety check on the machine while I was waiting for my test and I made him check me with it. I was indeed radioactive! [↩]
2. PET scans light up when there is either inflammation or cancer. Depending on the location and other symptoms, the doctor can decide whether one should be worried about inflammation or if it’s possibly cancer, thus requiring a biopsy. Hodgkin’s doesn’t hang out in the vocal cords, so we could rule out the Hodge. [↩]

Beautiful, biohazardous Jenny

Thought since I am up late fighting off nausea that I’d at least do something productive with myself. I took a picture today, to show my friends just how well and healthy I actually look. Now if only I actually felt as well as I look in the picture! Other than the central line in my chest, this is the healthiest I have appeared in quite a long time.

Runner’s World cover material, most certainly not. (Sorry.) Just your plain, ordinary runner girl.

I have a PET scan tomorrow (no, I am not taking anything written by Robert Krick, just to be safe). The scan is to rule out Hodgkin’s as a possibility for my symptoms. Super onc said to cross fingers on both hands and toes on both feet … so if you’re so inclined, please cross your fingers and your toes. Probably will know more by tomorrow evening, even if it isn’t totally definitive.

I appreciate all you kind people who read my blog and post encouraging messages. Thank you.

sense of humor intact

Upon presenting to Dr. S with a painful liver and spontaneous bruising, he said “Oh Jennifer, that’s not good.”

This is super onc. Dr. S is super onc. If Dr. S was a Civil War general, he’d be Hancock with an Australian accent, but minus the profanity and the height. Being Australian and thus probably not up on the finer points of American history, Super onc probably doesn’t realize the compliment being paid when I call him “Hancock.”¹ Super onc always is nattily dressed, clean, cool, calm, collected. For super onc to say that’s not good, well …

It reminded me of this quote by Charles Dana at the battle of Chickamauga: I was awakened by the most infernal noise I ever heard. I sat up on the grass and the first thing I saw was General Rosecrans crossing himself–he was a very devout Catholic. “Hello!” I said to myself, “if the general is crossing himself, we are in a desperate situation.”

I had the same reaction to my doctor’s “that’s not good.” When Dr. S tells you something is “not good,” it’s really not good. Let’s just hope it’s not Chickmauga bad! :-)

1. For those not familiar with Winfield Scott Hancock, his nickname was “The Superb.” He was the Union’s best corps commander and if the battle of Gettysburg had a hero, it was Hancock. [↩]

dealing

Unable to catch a break of late. Latest symptoms are spontaneous bruising, and a swollen sore liver. Doing the whole work up again. Scans and other tests this week. Hodgkin’s is always a possibility, of course, but a relapse usually doesn’t present this way. Some of the other possibilities are much worse than even a Hodgkin’s relapse. It’s again the wait and see game. Spending way too much time with Dr. S and his staff right now.

2007, please end.

Back coughing up blood again. And my chest aches like crazy again too. (The pain is more of a problem than the coughing.) Likely culprit is toxicity from that darned Bleomycin.

Bleomycin is used in pretty much all the standard chemo regimens for Hodgkin’s Disease. (I think the only one that excludes Bleo is MOPP, an older regimen that is generally not used anymore as a first-line therapy due to it’s severe side effects and the fact that ABVD has proved superior in terms of cure rates.) My oncologist was right on it and dropped the drug as soon as I had evidence of a problem. (That’s another thing about Bleo. It’s the least important drug of the four in ABVD. Dropping it after a few cycles doesn’t seem to reduce cure rates.) But it still seems to have made a mess out of my lungs.

My oncologist is sending me to see a pulmonologist on the 2nd of January. I don’t think there is much that can be done about the problem, but maybe the pulmonary guy will have some trick up his sleeve. If not, I hope he at least has a good fish tank.

(If you don’t hear from me again before the end of 2007, you can assume I’m hiding under my bed, living in fear of what might still happen in the last few days of 2007.)