Mea Culpa

Dr. Phillips just called to confirm my appointment on the 6th. I think Bill and I misunderstood Dr. Corvera’s plan. It will be a CT-guided biopsy; it’s all done at once. I have to report at 7:30 for a lab-draw and then report to the ambulatory surgery unit upstairs at 8AM to prepare for the scan/biopsy. Dr. Phillips further explained that she requested the laparoscopic biopsy because they would rather have an entire lymph node than a mere sample. She did say that she understood Corvera’s reluctance and will make do. She will have sufficient info by the 14th to discuss treatment. I informed her of my fear that my stomach capacity may be reducing due to the tumor and she felt that significant even as anecdotal as it might be. She asked about weight loss and I suggested about 5lbs in the past month. I think that we shall all have conclusive information by the 14th. I need to eat lightly on the 5th and fast from midnight to the procedure on the 6th. Now I have to see if I can get Bruce to get up in the wee hours of the morning of the 6th to get me there. I am certain he will.

In the dark...

I want to thank so many of you offering to drive me on the 6th. I don’t yet know the extent of that appointment; it may be two, back to back. I am going to wait and see before that driving decision is made. I am hoping to have the biopsy done the same day as the scan. My condition is actually Stage III [not IV as earlier reported.] according to my computer file at the VA. While Dr. Corvera was getting up to speed I was looking over his shoulder at what was compiled there. I want it all. I don’t know how much of that record is available to me [for my personal file] but I think in my case, at least [rational, not given to hysteria, in need of conversational fodder], I should be granted copies. Dr. Phillips did say that I should request a CD of all my imaging to have if I change facilities. I am curious about a patient’s access to their team of doctors. Is there a “Patient’s Bill-of-Rights” which outlines these needs? One thing is abundantly clear; the doctors seldom talk to each other. They rely heavily [too heavily?] on the notes. Had Dr. Phillips had as little as 5 minutes with Dr. Corvera prior to yesterday’s appointment it would not have happened. Considering how busy he is [he told us that if he was to perform the laparoscopic tissue extraction, he would not be able to do it for 6 weeks] and if the mass is indeed aggressive I could be dead by then. The standard protocol for treating indolent B-Cell lymphoma is to not treat it. It is watched and treated only when it is well progressed. Aside from the mass in my abdomen, I fit in that protocol. I am sure that any lack of communication between Dr. and patient is couched in regulatory hell and not a little paranoia. At this point I think I would prefer to sign a waiver of the doctors’ and the hospital’s responsibility just so that I would have all the info. They tell you not to go on a rip and self-diagnose after a quick visit to Wiki, but it does seem to be looking more attractive. Please don’t read this as belly-aching [pun intended] about the VA and UCSF; Bill will tell you that so far, everyone I’ve seen has been top notch. He and others have told me of their experiences with Kaiser and other facilities and practitioners and my plight does not see at all removed from theirs. So, I should be hearing about the biopsy schedule in the next couple of days and will then permit you all to fight over driving me. If it is merely for a scan, there is no reason I can’t do it myself but if there is a core biopsy done at the same time, I will gladly accept companionship.

Pregnant?

Bill and I set out at 10AM for San Francisco. He had an errand he wanted to take care of at Paul’s Hat Works. This delightful little throw-back shoppe is runs by 4 women partner’s. There are vintage hats everywhere. This is a men’s haberdashery but we were told that many women are purchasing men’s hats for themselves. Bill was having an old beaver-felt Stetson refurbished. An antique [1906] head-measuring device was employed. Paul’s is on Geary between 25th and 26th on the north side. Visit it soon! We then headed for the VA, an hour early. They would not check in any afternoon appointment until 12:30 so I took Bill out to the seating area at Land’s End. We sat and talked surrounded by beautiful bright red clematis overlooking the Marin Headlands and Point Bonita Lighthouse. After checking in we waited for almost an hour as a power failure wreaked havoc with the building. Everything was hooked up to extension cords and only 3 rooms were available for use. Dr. Corvera finally came in and we started discussing the situation. He brought up the scan on the computer and when he got to my abdomen he exclaimed “Wow! You are pregnant with tumor.” He was shaken by the size of it as well as its position. It was his opinion that a laparoscopic tissue extraction was inappropriate and that we would be better off doing a core biopsy through a channel in my back. He ordered up another CT Scan for the 6th of June and hopefully the biopsy procedure immediately after. I have to wait to hear if the biopsy will get scheduled on the 6th. I kept the appointment on the14th as the results should be available by then. I am going to digest all this and will write more later. Right now I am kinda tired.

Appointment on May 29

My appointment on May 29 is with Carlos U. Corvera, M.D. Associate Professor of Surgery Chief, Hepatobiliary and Pancreas Surgery Division of General Surgery This is, I assume, the preliminary consultation for the laparoscopic examination and biopsy. I have an appointment with my oncologist on Jun 14 which suggests that i will have the biopsy done in time for that.

Twiddling

I just now spoke with my oncologist on the phone and treatment has been postponed in lieu of another biopsy. Dr. Phillips is concerned about how “hot” the abdominal mass appeared on the PET/CT scan and in light of recent lymphoma studies wants to make sure that the mass isn’t a more aggressive form. New studies have concluded that both indolent and aggressive forms can attack simultaneously. So, for now I have a surgery consultation for a laparoscopic biopsy of the mass [they will also send a camera crew in to photograph it as well] on the 29th [that’s just the consult]. I have asked that they try to speed it up and she said she would do what she could. So here I sit once again, twiddling my thumbs.

Staging

In preparation for my consultation with my Oncologist on Thursday [5/17] I did a little research on terminology and this is what I came up with: Ann Arbor staging is the staging system for lymphomas, both in Hodgkin's lymphoma (previously called Hodgkin's disease) and Non-Hodgkin lymphoma (abbreviated NHL). It was initially developed for Hodgkin's, but has some use in NHL. It has roughly the same function as TNM staging in solid tumors. The stage depends on both the place where the malignant tissue is located (as located with biopsy, CT scanning and increasingly positron emission tomography) and on systemic symptoms due to the lymphoma ("B symptoms": night sweats, weight loss of >10% or fevers). Principal stages The principal stage is determined by location of the tumor: • 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 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. Modifiers These letters can be appended to some stages: • 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. • E: is used if the disease is "extranodal" (not in the lymph nodes) 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 a chest X-ray. • S: is used if the disease has spread to the spleen. Type of staging The nature of the staging is (occasionally) expressed with: • CS - clinical stage as obtained by doctor's examinations and tests. • PS - pathological stage as obtained by exploratory laparotomy (surgery performed through an abdominal incision) with splenectomy (surgical removal of the spleen). Note: exploratory laparotomy has fallen out of favor for lymphoma staging. So as best as I can determine I have Stage IV-A-X-S…

Preemptive

As a preemptive strike and to deal with the heat a little better I just took the shears to my fat head. I didn't shave it but did a quasi GI buzz cut. Took off the stache and goatee as well. Now I have an irritation rash on my chin, and unprofessional [sloppy] haircut and I itch like an S.O.B. Time for a shower and quality time with Buster and Phoebe [I have to relinquish control of them tomorrow.

Something else?

I just got a garbled phone call from the VA about a surgery consultation on the 29th of May. Maybe removal of the lump in my neck. I know they wanted to do that earlier. Well see.

More [Good]

Good news… the bone marrow biopsy is consistent with low grade lymphoma [indolent] and I should hear more later today or tomorrow AM. That is very comforting and relieves my tension completely.

HCT and Platelets

My next appointment with the oncologist is May 17th, a week from tomorrow. I just received the results from my latest blood test. The comments were “platelet count ois slightly low; Hct is also slightly low. We will follow these numbers on our next lab draw.” FYI [from Wikipedia] … the number of platelets or thrombocytes in ones blood determines if you are a clotter [high] or a bleeder [low]. There wasn’t much else I could understand w/o a medical education. My platelet count was 123. The “normal” range is 140 – 450. On the other hand, HCT [or Ht] was much more informative. Hematocrit [HCT] is the packed cell volume [PCV] or the erythrocyte volume fraction [EVF] of ones blood. It is the volume percentage of red blood cells in the blood. In males, 45% is normal in females 40%. My HCT is 40.0 with the “normal range” at 42 -52. I have 4 recent blood panels to compare. On 4/9 my HCT was 41.7 so it has dropped some. On 4/4 is was the same. On 1/23 it was 43.2. This makes sense. Now for the platelets. On 4/9 and 4/4 the count was 193. On 1/23 it was 164. I don’t know if diet makes a difference but I am about to investigate.

All fingers crossed...

Bill drove me down to the VA hospital this morning for a 10:30 appt. It drizzled all the way and the visibility wasn’t all that great. It’s like that on my visit with the oncologists. She was very good about ot letting me jump to conclusions but at the same time conveying how serious it is. She showed us the combo of the PET/CT scans as if looking up through my body from below. She started at the head and slowly drew the scan down pointing out the little flames of cancer along the way. When we reach the abdomen the entire cavity was aglow. She estimated that the mass was about 20cm. Good news is my distended belly is not because I’m fat. The bad news is it’s because of the cancer. They still do not know the specific type; it is B-cell Lymphoma of the follicular variety but they don’t know if it is aggressive or indolent. That will determine treatment. She did a bone marrow biopsy there and that should help but surgery is not out of the question either. I hope to see her again in a week. All fingers crossed.