More answers

Just had a phone conversation with UCLA oncologist Dr. T. We discussed my pathology reports and he pointed out that the follicular lymphoma was so very small at the time of my original biopsy that it would have been quite easy to miss. I guess it's a whole lot easier to spot when you know to look for it. We discussed the anti-PD1 antibody and how it is THOUGHT to work. Apparently the reason I can't find much literature about it is... There is none. Little to no human testing has been done at this time so it's really all just speculation. The thing is that my case is just what they need for their studies. I am SO hoping not relapse (Hodgkin) and tht my non-Hodgkin will respond well to the rituxan. We'll see what the future brings. He feels my prognosis is good. Dr. T says they will be writing a paper about my case. Oh boy. He is going to call and speak with Dr. Kubba. I'm hoping he'll have time to do so before I go for my next treatment on Friday.

Some answers

I emailed the two oncologists at UCLA this morning and they have both responded. How very nice of them to reply so quickly. I sent them a big laundry list of questions and Dr. T said he'll call me tomorrow afternoon to answer them. Very interesting though. They said they have received back the new pathology report and the UCLA pathologists found follicular lymphoma in the original biopsy materials (9/10). So, Dr. Kubba and Dr. T were correct in their speculation that both cancers developed at the same time... The follicular lymphoma just developed so slowly that we just now found it in the newest scans. This means the original pathology was correct EXCEPT they missed the follicular lymphoma. Hmmm... So, I had NSHL (classical Hodgkin disease) and the ABVD put that cancer into remission. I also HAD and HAVE non-Hodgkin B-cell follicular lymphoma and hopefully the rituxan will grant me a remission from it. Dr. T noted that I was of "some interest" to their pathologists. Yeah.

Radiation oncology consultation

Today I met with a radiation oncologist at Relands Community Hospital. His name is Dr. Z. Nice man, late 60s probably. Rather deliberate and slow in his speech. I'm sure he's bright and talented, just kinda slow moving. I spent an hour and a half with him while he reviewed my case. I would have appreciated it if he had done that before I arrived but I guess you take what you can get. He showed me my CT scans which was pretty interesting. He agreed it was difficult to decide if my NHL is stage I or II based on how many lymph nodes are involved. Probably Late stage I... Almost stage II. We discussed the possibility of treating me with radiation. Apparently lymphoma is very sensitive to radiation and usually responds favorably BUT studies have not shown any difference in long-term survival rates using radiation as opposed to NOT using radiation. Dr. Z said if I did elect to be treated with radiation the dosage would be between 24-30 gray which would be given at a rate of 1.8 gray 5 days a week until the total dosge was given. (Gray or Gy is a unit of radiation dosage named after a british physicist named Louis Gray) He said this is a relatively low dosage and would pose minimal risk to my bowels and organs and a low risk of developing a secondary cancer from the treatment. Good news but certainly not enough to compell me to submit to radiation treatment. In other news... I saw Dr Rau Monday and he thought the site of my port-a-cath looked fine.

Rana's crias

Rana has done amazing things for us and our breeding program. Here is a list of her crias - probably in the order of birth. :) 1. AVC Instant Karma - dark fawn male 2. AVC Merino's White Rose - white female 3. AVC 20th Century Fox - dark fawn female 4. AVC Hawke's Joaquin - white male 5. AVC Rana's Lady Hawke - white female 6. AVC Rana's Sparrow Hawke - white female 7. AVC Rana's California Dreamin' - medium fawn female

Birthday present

We've been really worried about the three alpacas who still hadn't delivered their crias. It's been hot here. We have been most especially worried about our grand dame Rana who was at full-term 3 weeks ago. She looked so miserable yesterday that we sheared her standing up. She was angel. She just stood there patiently while I removed as much of her fleece as possible. It wasn't pretty but we did get most of it off. Her respiration rate went down and she looked much more comfortable. I woke up at 4:00 am this morning and stumbled out to the barn to check on everyone - there was Rana with a head and two front legs sticking out of her. Yeah! I woke Brad up (poor guy has to work today) and we gently slipped the cria out and onto the ground. It is a light fawn, or possibly beige, female. She is strong and was struggling to get on her feet immediately. So far, so good. An hour later the cria has been on her feet several times and should be coordinated enough to nurse in the next hour or two. How nice Rana decided to have her in the cool of the morning. By the way, it's my birthday today. I couldn't think of a better present. Thanks Rana!

The day after rituxan

I feel great. We sheared a couple of alpacas this morning with the help of Lori A. and her son Greg. Mr. Cash is shorn and he looks amazing. Ready to move to Montana for the summer. Blueberry's little guy hooked up and is doing fine. Sigh of relief.

Alpaca cria roll call

So far we have had 6 crias this spring. Here's a list: Snow Hawke and AVC 20th Century Fox - white female with a dark fawn spot on her left side. We named her AVC Hawke's Electric Daisy. Her fleece is the densest we have seen this season. It is bright and tightly crimped. The fleece length looks like it will be excellent. Her fleece is silky soft and her head is lovely. She looks like a feminine version of Hawke. Hawke was a multiple Color Champion, has won at several fleece shows and has also won two Get of Sire competitions. Foxy was only shown once and placed Reserve Champion in the fawn female color group. Snow Hawke and CCR breezy Tuesday (belongs to Roberta S.) - solid white male. Roberta named him Butch Cassidy. Tall, handsome boy with all of the presence we saw in his sire at that age. Very attractive head. Good density, fine, looks like his crimp will be well-defined. Big-bones and confident. SG Mr. Cash and B&B Sehiya - solid black female. Sehiya was an eight time show ring Color Champion. We are thinking of naming her cria AVC Johnny's Sephora. This is the one. Did you really hear what I said? This is the one. She has it all going on. Big but obviously feminine. Tall and proud. Big-boned. Elegant movement. And her fleece... Tight curls, shiney bright and BLACK. The curls continue up to the top of her top knot. Density is GOOD. He are very hopeful for this girl. She's got the blood too. Sehiya is the product of us bringing together our Snow Hawke line with our beloved (and sadly deceased) SA Peruivan Maxwell (he was a modern dark silver gray male and was a wonderful producer). He's been gone for several years and Sehiya is all we have left of his blood after we lost his other daughter Thistle, earlier this year. SG Mr. Cash and Blueberry's Sweet Surrender - dark silver gray female with a white face. No brown spots. Curb appeal to burn. We have named her AVC Jonhhy's Skye Blue. She is solidly built with subsance of bone. She is straight and moves beautifully. Skye's fleece is beautifully bright and tightly crimped. Se is above average in density. We just love this girl. Not only is she beautiful, she has a great pedigree. SG Mr. Cash and CCR Hawke's Roen. Roberta's girl Roen had a light fawn female. The birth was easy but it was a hot day and the cria was as limp as a dish rag. It took us hours to get her under mom and it didn't really happen until it started cooling down for the evening. We finally got her nursing and she's doing well. Her fleece is the most lovely shade of apricot fawn. Above average density and good fineness. She is refined and feminine. She is two days old now and is starting to interact with Skye and Sephora. SG Mr. Cash and Snowmass Blueberry Haze - black male cria. OMG, he is handsome. And enormous. And maybe dumb. :( We are still struggling to get him nursing. He may actually be doing it when we aren't looking but no way to be sure. About every 2 hours we milk Blueberry and tube feed him. Sadly we will reach the "sink or swim" decision at some point but we are doing everything we can to help him get hooked up. We have had some small successes but we are not nearly as far along as we should be at this point. Anyway, the boy looks JUST like his sire. Gorgeous head, HUGE boy (will weigh him tomorrow), big boned and the fleece looks very nice. If he lives, he has potential. News flash! We just saw him under mom and nursing. Maybe...

Second rituxan treatment completed

I had my second rituxan treatment. Dr. Kubba wasn't in today so I saw one of his associates. He was very nice. The nurse easily accessed my port. Cool but I still think its creepy. They gave me Benadryl and steroids again so I should be bouncing off of the walls tomorrow and I'll expect to crash Monday or Tuesday. They ran the bag of rituxan into me in about an hour and a half. Pretty good. The Benadryl made me loopy and I slept for a couple of hours when we got home. This morning before we left our silver gray girl Blueberry delivered a HUGE black male Johnny cria. He is on his feet and strong but we're having trouble getting him to hook up and nurse. VERY frustrating. We're milking her and tubing him trying to buy time for them to figure this out.

And another thing...

So, where were we... Onc #1 tells me that my case is unusual in several ways. 1st, while it does happen, it is unusual for someone to develop two different lymphomas as I have done. 2nd, and I find this most ominous, it is very unusual for someone to do this in such a short period of time. Less than two years, two cancers. Geez. Onc #1 makes it VERY clear that my case is of particular interest to him and fits nicely into his research work. Oh joy! You sense the sarcasm, yes? He proposes that I will continue to see him, maybe once or twice a year for, well forever. He proposes that when I do require treatment (and that day will certainly come) that he oversees it working with Dr. Kubba. I am agreeable to all of this. Except for the having treatment stuff, etc. We agree that when there is activity found on future scans I'm gonna have no choice but hae another biopsy. OMG! BUT Brad and I think both docs were a little freaked out at the invasive nature of how my biopsies have been harvested. I'm hoping that they may be able to propose something less invasive when this happens. Well, there you have it. I'm not sleeping very well right now (imagine that!) but hope I do this evening and tomorrow is rosier. Seriously, this could be so much worse but can't help whining a little. I promise to suck up my bottom lip before I post again. Thanks for your patience.

Meeting with the docs

The Fellow reviewed my medical history and examined me. We discussed my original cancer and my newest accomplishment - non-Hodgkin lymphoma. We discussed my recent surgeries and my first rituxan treatment. He was very nice and bright. Los of empathy. This guy is gonna make a great oncologist. He explained he would now go and discuss what he had learned about me with oncologist #1 (ok, I just don't want to mention their names, at least not now) and then they would both come to talk with us. Maybe 15 minutes later, both doctors join us. Onc #1 agreed all of my diagnostic materials would be read by pathologists specializing in lymphoma. He said they are some of the best in the world. Samples from both my original cancer, and my new one would be examined and the diagnoses would either be confirmed or revised. They hope to have this information for me sometime next week. Goal #1 has now been accomplished. We discussed so many things there is no way I can include them here - nor would I risk boring you to tears (too late, you say?). Bottom line, while everyone continues to express optimism there are many possible very bad things that could happen (yes Carole, I know - or will not happen). They include: my Hodgkin's could relapse, my non-Hodgkin could prove non-responsive to the rituxan or it could become refractory to it, the non-Hodgkin could progress. Or none of the above. Holy crap! Try getting your head around all of that! So, the quest to understand (and therefore gain some kind of imaginary control over my life) begins again. Let me tell you - Hodgkin lymphoma was MUCH easier to understand than is this new beast. I WILL get my head around it though. Time for another break.

A whole lot to chew on

We went to Santa Monica to meet with the lymphoma specialist for my second opinion yesterday. What a trip. I'm not really sure why but I was extremely anxious about this, to the point of being light-headed by the time we actually saw the doctors (turned out, we met with two doctors, more in a minute). The drive to the clinic for our 3 pm appointment wasn't too bad, clear sailing for the most part. We arrived more than an hour early and had a lovely lunch at a restaurant called The Daily Grill. Excellent food and service. Santa Monica is an interesting part of the world. Lots of high-profile businesses: Universal Music Publishing, Yahoo, M TV and lots of others. When we entered the medical office everything was nicely done. Interesting surfaces, inviting spaces, everyone was very polite and very helpful. I paid my $10 co-pay (I am SO lucky to have insurance) and off we were led to sit in an exam room for well over a half hour. You know how much I hate LATE but whatcha gonna do. Brad and I had our fingers crossed tht the doctor would have actually read my files and we could have a meaningful meeting. The door opened and in came a doctor who was definitely NOT the guy we came to meet (I saw his photo on the UCLA website). He introduced himself and explained he was a Fellow working with the hot shot oncologist. Ok. It was immediately obvious that he HAD read my files and was very familiar with my case. Sigh of relief. More in another post, this is getting a little deep.

Blue skies

Today was better. :)

Did anybody SEE that train?

You know, the one that HIT ME? Ok, so they said possible rituxan side effects were fatigue and flu-like symptoms... Today I feel exhausted and last night my knees HURT! It's like I'm walking thru water, moving in slow motion. Whew. I hope this passes soon. The semester is almost over, just two weeks to go then home free until mid-August. I can do this.

One second opinion, coming up!

After many phone calls (insurance company, UCLA) we will be going to UCLA this coming Monday (May 14, 2012) for a second opinion. I've hooked up with one of their top lymphoma specialists there. All records have been collected and those plus my slides will be FedEx-ed to them tomorrow. I'm nervous and excited.

Long legs and knobby knees

Sehiya and her cria (still unnamed) are doing well. Sehiya passed her placenta about an hour after the cria arrived and maybe an hour after that the baby nursed for the first time. She is a little wonky for having been folded up in mom for so long so it took her awhile to gain the necessary coordination to nurse but she got the job done. We felt comfortable enough to go to bed around midnight. 5:30 am came REALLY early this morning. Anyway, here's a photo of Sehiya and her angel. I'll post a better one soon.

Baby, finally!!

At 7 pm tonite we literally DRAGGED a gorgeous black female cria (remember, that means baby alpaca) from our beloved Sehiya. The poor girl has been miserable all day. Chris (our ranch hand) texted me all morning with updates and photos of her. I checked her every 30 minutes or so when I got home. All signs of labor were present EXCEPT for contractions. None! Brad and I stood staring at her until we finally decided we had to take action. I washed up her back end with nolvasan, gloved up and with an enormous handful of lubricant (seriously, we have a 1 gallon container) went in to see what I could see - or rather FEEL. What I felt was a nose in the birth canal. Sehiya's cervix still wasn't as dilated as I would have liked so I sort of eased it open with my hand and more lube. I went a bit further in and found a foot. I was able to easily pull it out. Black! Back in I went to find the other foot which also slipped out easily. Now the hard part - a big freakin' head. The way alpaca skulls are built makes coming into the world a little challenging. The skull is largest at the eye orbit and usually all goes easily once this obstacle has been overcome. It took the two of us, taking turns pulling while Sehiya FINALLY contracted to work the cria's head out. Then it was just a matter of easing HER into the world. Whew! Both mom and cria seem fine. The baby is taking her first steps and Sehiya seems willing to let her underneath to nurse. It's going to take a few hours for the cria to gain coordination but early signs look good. We still need a placenta but Sehiya continues to contract. More later.

1 down, 3-7 to go

I had my first rituxan treatment today. It went well. The oncology nurses used my brand new, SORE, port-a-cath today and it worked great. The "stick" hurt a little but after that it was smooth sailing. They started me with IV Benadryl and IV Tylenol (MUCH more effective than the oral version). Then they gave me some IV steroids so I was loaded for bear before they even started with the rituxan. Anyway, after all of that stuff they ran a test bag (100 ml) in me to e sure I didn't go into rigors or anaphylaxis. :) When that didn't happen they gave me another 600 ml of rituxan, slowly. The entire process took about 5 hours. Actually, I thought it would take longer. So far, so good. I feel well BUT I remember always feeling like Superwoman for a day or two after my ABVD chemo treatments, again because of the steroids. About 3-4 days later it would kick my butt! Horrible nausea and epic vomiting. Brad decided (back then) that the barf container would be this large stainless steal livestock bucket. Try holding your head over that thing. I still can't look that bucket in he eye. So, we'll see how I feel in a few days. I've spoken with a few folks who have had rituxan and they have had little to no side effects so I'm hopeful. Doc Kubba says I'm most likely to experience flu-like aches and pains but maybe not. Fingers are crossed. The next treatment is in two weeks. My surgical site is still sore but not so bad. I'm not even taking ibuprofen at this point. I don't have trouble extending my arm but I'm trying to be careful not to do any liftin with it. STILL NO BABIES!

Still kicking... Again

The surgery to install my port-a-cath was today. Honestly, it wasn't that bad... Really more creepy than anything. That angel of an RN named Phoebe (I may have neglected to mention her previously) came to start my IV and she did it with minimal pain. She started it for my last surgery (seriously, just 3 weeks ago??) too. I didn't like this anestsiologist as much as the last one. I had to argue (lots) to convince him to let me leave in my contact lenses and he didn't give me enough versed to spare me the memory of the operating room. Also, I was nauseous and vomited a bit after this surgery, which is a first in the past four. Bad on him! Then, he sounded like he was mad at me in recovery. He said "I've given you anti-nausea drugs four times now and that's all you get." Kinda bitchy if you ask me. I've come to hate waking up post surgery more than anything (not the being alive part :)). Being all groggy and fighting to overcome it. Brad got me home and into bed as quickly as possible and I slept on and off all afternoon. Thank you so much to all of you that have kept close tabs on me... Carole and Bud, Renee, Ruth, Lori, Sara Jane and Karen especially. You are the best. Tomorrow is the first rituxan treatment. Gulp. Everyone tells me it should be event free and minimal side effects. I guess it's just the "gotta be treated again" thing that's got me a bit down. Sigh. Remind me to tell you about what's going on with the second opinion soon. Also about my amazing new friend Deb who was introduced to me by the Lymphoma Research Foundation. Oh yeah, and my wonderful Aunt Virginia who is sharp as a tack and going strong at 85 years of age. And BTW, STILL NO BABIES YET! Our beautiful Sehiya is approaching a full year of gestation. Come on already girls (but wait until Saturday, ok?). More later.

More squeaky wheel

I don't usually go back and re-read my posts so I'm often relying on memory as to what I've already told you. Anyhow, I've been talking about getting a second opinion on my two biopsy samples and I have a big bag of slides just waiting for a lymphology specialist to fire up their microscope to view. My PCP (primary care physician) sent in a request for a second opinion to their medical group. Got the word today - they want to send me to some oncologist here in a local community. To my knowledge (and no one could seem to figure out) this person is NOT a lymphology specialist. I told them I would not accept their offer but instead (again!) explained I wanted a tumor board to review my entire case. Ok, they would ask for approval for an opinion from someone outside of their group. Grr! By now I'm pretty irritated. I chew on this for a few hours and work up an even bigger irritated. I decide to go directly to source and call my insurance company. First gal I speak with is pleasant but has no clue how to get me what I need. She speaks with someone else and they figure out which department can help me. I'm transferred to them, I plead my case and he woman says to me, "My sister is a nurse here and she was recently diagnosed with liver cancer. Also, my 33 year old daughter was recently diagnosed with breast cancer and she is in total denial about what's happening to her." OMG! This woman tells me "I understand what you're going thru and I understand why you want this." one way or another, we will make this happen. We may not be able to get an official tumor board to convene but if not, we'll send you to multiple specialists until you get the info you need." Then she asks me to hold for a minute, comes back on he line and tells me she can't promise but she just spoke with someone who she thinks can help make the tumor board happen. OMG! Did I say that already?? So, she faxes me a form, stays on the line and helps me complete it and has me fax it back to her. She tells me "They aren't very busy right now and she'll get right on it." Whew. Well, time will tell if I ever get my tumor board but I think I'm on track to get some quality info. I'll keep you posted. Thanks for reading. :)

Squeaky wheel

That's me, the squeaky wheel. Anyway, before I begin my rant (oh, maybe not a rant but I'm cranky) I want to say... One small thing I don't like about this google blog is even if I insert paragraph breaks it uploads my entire post as one big blobby paragraph. If there is a way to fix that,it eludes me. SO, you may see multiple postings on he same day so I can break different thoughts/discussions into different (visual) sections. With that in mind...