Lymphoma, the process - parts 1,2,&3

Originally Part 1...

Friday, July 8, 2011

"Lymphoma", Dr. S said. "Cancer." I was stunned. Cancer was not mentioned as any of the possibilities that my lump had been. That lump was removed from my lower right side abdomen just a week earlier. The best guess from whomever read my CAT scan was blood clot. Dr. S, the surgeon, thought it might be a hernia. Cancer? How did that not come up in any of the conversations? Oh well, it is what it is. At this point, I'm writing, L... L... and Dr. S starts spelling it for me. I'm not thinking straight but I fake it as best as I can.

The end result of the meeting with Dr. S, aside from him liking how the incision area looked, was that the pathologist was getting a second opinion and I was already scheduled to meet with an oncologist.

My last words to Dr. S before leaving the office was, "This is going to be such a hassle." He nodded his head and chuckled as he was supposed to for I meant it as an understatement.

Telling Marlyn, my wife, was supposed to be easy. She had had knee replacement surgery just the day before and I was counting on the medication to buffer the reality. And it worked to a certain extent. The physical therapist was in Marlyn's hospital room when she asked how the meeting with Dr. S went. If I stalled she'd worry. So I told her, "Lymphoma, but we really won't know anything until I meet with the oncologist on Tuesday." Then the physical therapist says, "Lymphoma, oh that's bad." Jerk!

Somewhere throughout the day I e-mailed a few people with whom I work. From a business continuity standpoint, I believe they need to know that my availability will be iffy for a while. It's too early to give specifics but I felt I needed to give them fair warning.

Tuesday, July 12, 2011

The oncologist's nurse took all my history and medicine list. Nice person, we chatted awhile. I'm going to guess that I was a bit nervous since I just kept talking and cracking jokes; I'm not normally like that... the jokes yes, the chatter, no.

Dr. O, the oncologist appears to be a nice guy. "Low grade non-Hodgkins lymphoma" rolled off his tongue as if he were saying, "It's raining outside, again." What followed was some explanation of low grade (slow growing) and non-Hodgkins and some of the possibilities for the cure. Yes, we are going for a cure, not just remission. Two more tests are needed at this point, a bone marrow biopsy and a PET scan. The, "But, I don't have a pet", crack was lame but Dr. O laughed anyway. Over the previous weekend I had done enough internet research on lymphoma to understand what he was saying and what the next steps would be. No surprises from this visit; this is good.

That night Pastor Kathy stopped by the house to see how Marlyn, who was now home from the hospital, was doing and to check in with me. After filling in Pastor Kathy on the findings of the day, I realized I had to start telling some key people before they heard it through the grapevine. It would be rude for some friends and close acquaintances to hear about my news from someone else. It's not that I haven't notified family and my very closest friends, there's a different level of friends that I've just started to get to know after moving here just over three years ago that I needed to tell. Sorry, Sue; I should have called you.

Tuesday, July 19, 2011

The bone marrow biopsy as went well as can be expected. Dr. O did the procedure with a WVU medical student looking on, Linda the nurse, and a few folks from the lab as audience.

My perception of how this went... I was lying, face down on a hospital bed, with a pillow under my hips, and half my rear end exposed to the world. I've been in hospitals before, I've found it easier to check my modesty at the door so, at this point, I was comfortable. Dr. C, first, numbed the area where he would be working. He then pushed a large core needle through the skin to the bone then applied a lot of pressure to push the needle through the bone. "You can tell when you get through when it gets easier to push.", he told the student. They cannot numb the bone, so, this hurt. It did not, however, hurt as badly as everyone told me it would. It was on the level as a good whack to my funny bone. It felt like he made two jabs at it then extracted the needle. The creaking sound the needle made as it left my bone surprised me. It reminded me of an old creaky door. "Old creaky bones." is no longer just a saying. I started to laugh.

The whole time I was being pierced, Linda who was positioned on the opposite side of the bed as the doctor, held onto my upper arm. I felt like she was there to hold me down in case I jumped. No offence, Linda, but you are way too small for that. I sensed that Linda relaxed as soon as I started laughing.

After the bone drilling was over, the lab sent someone to draw blood. I had fasted for this series but I was later told that it was not necessary.

Originally Part 2...

Friday, July 22, 2011

My hip is still sore from the bone marrow biopsy. Luckily, it only hurts when it's touched much like a bad bruise would.

My PET scan is scheduled for tomorrow. I am to limit my sugar intake (trying for none) and am prohibited from strenuous activities.

Saturday, July 23, 2011

I'm being prepped for the PET Scan. The nurse checked by blood sugar level then injected me with a sugar based liquid needed for the scan. Now I sit and wait for 45 minutes. I'm updating this on my netbook as I wait. The PET Scan machinery is actually in a trailer. It's 90+ degrees out but it's cool in here, I'm chilled but comfortable. There's no wifi here in the trailer, had it in the waiting room, but not here.

The scan took 30 minutes. It reminded me of an MRI, keeping still while the table moved in and out of a tube. The table is hard but the pillow under my head and shoulders, and a wedge under my knees made it comfortable. They scan you in whatever you are wearing.

I wore my baggy bicycling shorts and a t-shirt. They provided a blanket because of the chilled room. I'm not sure what the procedure would have been if my pants or shirt would have had metal but I'm sure something would have had to have been done.

I could either lay with my arms at my side or above my head. I chose above my head because the table didn't seem wide enough for me to have my arms at my side

comfortably. I was fine in that position for about 20 minutes; my arms got sore during the last 10. My mind kept wandering. I tried praying but I could not stay on topic. I even nodded off for a little while.

This machine seems to be kept as busy as every 30 minutes would allow. While someone is being scanned, one or two people are being prepped.

I was curious about this set up being in a trailer so I asked. It goes someplace different every day.

I read somewhere that I was going to have to remove all jewelry. My only jewelry is my wedding band. It took soaking my hand in ice cold water and a good dousing with Pam non-stick cooking spray to get it off (Thank you Carol). That was painful. I am at least 15 pounds heavier than I was the last time it was taken off. I did not verify the need to remove all jewelry with the PET scan technicians because I decided that it should not take that much effort to remove my wedding band. Eventually, I'll have it re-sized. My advise to everyone is that they should occasionally check to see that they can effortlessly remove their wedding band, probably in the presence of your spouse and not alone... on a Saturday night... in a bar.

Monday, July 25, 2011

I met with Dr. O the oncologist today. The prognosis looks good.

The bone marrow biopsy identified no unwanted activity (good news). That sample has been sent to WVU Hospital in Morgantown for a second opinion but only as a quality control procedure.

The PET scan showed a couple cancerous spots and a couple suspicious spots. The oncologist will confer with the radiologist on these suspicious spots. The local tumor group (30 members) will also get to review my results. I will probably be referred to Johns Hopkins (just down the road) or Morgantown (thank you WV State insurance) for a second opinion on the PET scan. That won't happen for about 3 weeks. I get the impression that it is the unusual locations from the PET scan that has the oncologist thinking of a second opinion.

The best guess right now is that I will be put on a 3 week cycle of chemotherapy, the CHOP-R variety. Six to eight cycles should do the trick. Dr. O did explain that I would not be getting radiation therapy because that is more for people who only have cancer in one location.

Of all the side affects of chemotherapy that are possible, my lowered immune system is bothering me the most. I'll probably avoid crowds and strangers even more than I do now. I had already stopped shaking hands with strangers, I'll probably need to just fist-bump everyone... or even just wave. I sure am going to miss hugs.

Dr. O took his time with us, Marlyn joined me in the room; she even took notes for me. After some discussion Dr. O even took us to his office to show us the images from the PET scan. Some areas were lit up more than others. Heart, bladder, both hemispheres of the brain (yea!). The images were not embarrassingly revealing but it would not be something I'd enjoy seeing on the internet.

Lots of people had asked to be updated on what we learned. I have lots of e-mails to write. I'd call people but there are just too many loving souls to do that with and get it done.

Originally Part 3...

Tuesday, July 26, 2011

This log is supposed to be about the process I am going through. I have resisted writing about what I am feeling until now. I think it important to say that I feel annoyed. I was ready to get the whole story and the start the curing process yesterday. What I got was more of wait-for-more-information. The reason I am revealing this is that I get the impression that I will need to get used to this. I need to find my patience again and keep it handy.

Dear friend and neighbor Stacy suggested today that, if I start losing hair, I should just shave it all. I'll keep that in mind.

Wednesday, July 27, 2011

I had an appointment with my dentist today. I'm not sure why, but she said she needed to be told about my lymphoma.

Today is the first day I didn’t feel the results of the bone marrow biopsy procedure on my hip.

Thursday, July 28, 2011

The oncologist's office called. I am being sent to WVU Hospital in Morgantown to get a second opinion. I'm going to be seeing Dr. X.

Friday, July 29, 2011

WVU Cancer Center in Morgantown called and left a message to confirm an appointment on Tuesday, August 2 with Dr. Y. I followed up with some questions. I found out that my 9:00 appointment is with the lab. My 10:00 appointment is with Dr. Y during which he would lay out his treatment plan. He apparently expected this to be a hand-off rather than a second opinion.

Both Dr. Y's office and I quickly called my oncologist's office to verify that this was, indeed, just a second opinion and the I was going to be seeing Dr. Y rather than Dr. X.

This sort of miscommunication between two distant offices of the same organization is not giving me warm and fuzzy feelings.

A call into Dr. Y's office asking if the change from hand-off to second opinion changed plans for Tuesday. That call was not returned.

Tuesday, August 2, 2011

The 9:00 appointment at the WVU Cancer Center lab was punctual and brief. The lab technician took 6, maybe 7, vials of blood. She was good, I did not feel the change of vials at all. The joke that broke her from her this-feels-like-a-Monday-morning mood was when she was putting on latex gloves and asked, Do you have a problem with gloves? My response was, "No, just mittens." Yes, I know it is stupid but otherwise I'm just another component on the assembly line. (If you think that was really bad you might as well stop reading 'cause it's only going to get worse when I discuss my bicep.)

The short answer on how the 10:00 second opinion meeting went is, "Two oncologists do not necessarily agree on what all I have and how to treat it, more tests will be made and a discussion with my local oncologist will follow."

Now for the long answer.

Long ago I read that when you go for a second opinion, remember that you are only there for a second opinion. Given that, the meeting with Dr. Y feels more like a visit to a time-share sales pitch than a medical consultation. I was clear, from the beginning, as to why I was there. When he tried to set up a return visit (more than once) and presented his plan for treatment, I had to remind him that I already had an oncologist and it was he who I was going to consult for treatment.

One of those sayings that keep coming back to me when I least want it to is, "Every opinion has some basis." So, when Dr. Y presented his we-are-the-almighty-university-and-your-hospital-is-nothing-more-than-a-M*A*S*H-unit attitude, I was confused and surprised. Granted, he did point out that the hard lump in my right bicep was not normal for lymphoma. He found it and pointed it out to me. My comment, "That's not from me doing push-ups?" (You were warned.), did get a chuckle out of him but he quickly said, "No!"

All in all, he does agree that I have lymphoma but wants to know if the bicep lump is something else altogether (possibly sarcoma) and is questioning just about everything else that was done by the doctors in Martinsburg. I think that it is important to mention that Dr. Y is not opposed to just waiting until my lymphoma starts to bother me (pain, night sweats, loss of appetite, etc.) to start a chemotherapy treatment. He also is not a fan of the H part of the CHOP chemotherapy treatment.

Okay, back to that old saying about opinions. I had trust in my original doctors but when someone else raises the question, I need to take notice. It’s time to do more homework.

Since this log is about my experiences I need to include this segment because this the second time I have interacted with a hot-shot, know-it-all doctor who makes you ask, "What the heck was that?" when you leave the office. I was lucky in that I had some experience in this but it still surprised me when what I was expecting was totally turned on its side. Such questions as, "Where do you live? How far from here is that?" (By the way, it is 150 miles and not conducive to regular office visits. ) and "Do you drink alcohol excessively?" To that last one I said... to the doctor whose nation of birth probably prohibits all use of alcoholic beverages because of religious reasons... "You need to define excessive." The questions sounded aggressive and the tone was abrupt and I was made to feel stupid when I didn't remember the year I had my tonsils out ("about half a century ago" should be close enough). My wife and I were both taken aback by his attitude, lack of "bedside manner", and very different viewpoint of what was going on with me. That, however, does not make him an idiot; he probably is brilliant. It was my oncologist who asked for the second opinion, not me. The fact that Dr. Y has a differing opinion than my oncologist (as well as my surgeon AND the local pathologist) only means that more research and discussion is needed and that I need to get more involved because what I have is, apparently, not typical. First things first, if my local medical care is really an off-shoot of the ole’ 4077^th ; I need to know if my doctor is “Hawkeye” Pierce; Charles Emerson Winchester, III; or Frank Burns.

Link to Part 4: http://vgrick.hubpages.com/hub/Lymphoma-the-process-part-4