The cutest cria ever

This is Johnny's Skye Blu of AVC

I'm just figuring out how to post photos to my blog.

26th anniversary!

Today Brad and I are celebrating our 26th wedding anniversary. Actually, it's been 28 years because we lived together for 2 years before we got married. Wow, huh? We are having a great time spending the weekend together. My friends Bud and Carole recently celebrated their 45th wedding anniversary. Holy cow and congratulations!

Pityriasis rosea

Well now, what do you know? I do not have psoriasis but rather a slightly unusual condition known as pityriasis rosea. 

The medical community has a lot of unanswered questions about this skin condition including what the heck causes it. The etiology is unknown... It might be a reaction to a viral infection or it may be caused by something else completely. Here's what they do know. The condition begins with a red scaly patch, which gets to be about 1-2 inches in diameter. Its called a herald patch. Mine was on the top of my arm near my elbow. A few days later, all hell breaks loose and red patches - lots of them - develop over a short period of time. They occur mostly on the trunk of the body and down the legs. For some folks they itch like crazy but mine have been pretty quiet. There is no known cure. Steroids may help the itch but won't make the patches resolve. Antibiotics and anti-fungals don't help because it isn't bacterial or fungal in nature. The only cure comes with time. It can take anywhere from a few weeks to a few months for it to disappear and it may or may not reoccur. Ok, I can deal with this.

My theory is that the rituxan treatments are suppressing my immune system making me susceptible to weird crap such as pityriasis rosea.

2nd rituxan maintenance treatment

Back to the infusion room today for the second rituxan maintenance treatment. Brad was with me as always. Weigh in (painful these days, sigh), blood pressure (normal), finger prick to obtain blood for a CBC and on to waiting room number 1 to meet with Dr. Kubba. We discussed my overall health. I feel great. Talked about this weird skin thing that's popped up over the last couple of months. Looks like its psoriasis. Oh joy... But better than what I have been fearing which is cutaneous lymphoma. When I suggested that as a possibility Dr. Kubba said he thought it was unlikely (yeah!) and it would be kinda like winning the lymphoma trifecta from hell. Ok well let's not go there and wait to see how this pans out. I will see Dr. Mehta and then on to a dermatologist. My mother had horrible psoriasis as a child and so I'm guessing I've inherited another freaky gene from her.

I will have another CT/PET scan early in February and we'll see how things are looking. If the scan is clean then I'll move to one scan a year. A graduation of sorts I guess. 😊 Hopefully the outcome of the scan will be good and I'll only have to chug that nasty barium once a year.

We discussed changing my rituxan maintenance schedule to every two months rather than every three months. Dr. Kubba said he'd read research showing this was providing good results. I've read similar literature and so I readily agreed to the change. Oh boy, six times a year in the big chair!

I can't recall if I've talked about rituxan before so forgive me if I repeat myself. Everything I've read about it says that the treatment of follicular lymphoma can be divided into two eras - before rituxan and after rituxan (I means it's adoption in the treatment of lymphoma). Rituxan is in a way a kind of acceptance that this is an incurable disease. I don't like that one little bit. I would be inclined to take a bigger risk and undergo RIT (radio immunotherapy) and try for a cure. It's a truly elegant idea. Antibody molecules that bind to CD20 receptors on B cells (those are protein molecules on the surfaces of the cells) are bound to radioactive molecules and injected into the body. A single treatment is given. Those antibodies bind to B cells and deliver the radioactive molecule specifically to those cells. There is way less of a chance of damage to organs and secondary cancers (the cure killing the patient). The down side is that the treatment comes with nasty side effects, all of the really good ones, nausea, vomiting, hair loss... No way they will do that to me while I am asymptomatic. Really that's ok but the thought of a possible cure is appealing.

Modern treatments for follicular lymphoma have somewhat increased OSR (overall survival rate) from around 10 years to maybe as long as 14 years. This is a good thing. Rituxan has not increased OSR but it has increased the interval between diagnosis with follicular lymphoma and the first chemotherapy. Remember, rituxan isn't technically chemo - it's a biological agent (as opposed to chemical). So, you're are essentially buying time before you require POISON to treat the disease. There are several promising treatments close to approval so it's just a waiting game you try to survive to wait for those treatments. Sigh. Hell of a way to live.

Having said all of that, life is good. I have a month off before classes begin in January and hope to get a lot done around the ranch. The crias (alpaca babies) are getting big! I'm not sure why but this year we just kinda never got around to weaning them so we have these gigantic babies that are unnaturally attached to their mothers. I think we are gonna take the plunge this weekend and subject everyone to a week of whining and crying as both parties make the adjustment. Good thing it's winter so the windows are closed and we can't hear them. 😉

I guess that's it for now. Sorry to ramble and thanks so much for reading. It is my hope that someone who needs this info will stumble upon my blog and find it helpful. I know several of my friends read this and I appreciate your interest and friendship. If I don't blog again before Christmas I'd like to wish you a wonderful holiday and a prosperous and healthy new year.

November port flush

Last Thursday was my monthly date for getting my port-a-cath flushed. I asked if I could speak with Dr. Kubba before the flush because I've developed a few spots of scaly skin. Psoriasis maybe (my mother had it bad as a child) or... Cutaneous lymphoma?

Ah the Internet, a double-edged sword. The fountain of knowledge with the potential to confuse, confound and completely freak out the armchair doctor. Have you ever done it? Had some symptoms and looked them up online? Hmm, the diagnosis is an ingrown toenail or no, wait! Maybe it's a rare malignant big toe tumor and you have only 6 months to live. Sigh. A little knowledge in the wrong hands...

So, I decided I wanted Dr. Kubba to take a look at this skin thing just to get it on his radar.

Dr. Kubba was a sweet and patient as always. He gave it a good look and after talking it over we decided on probable psoriasis. He prescribed an ointment (combination anti-fungal and steroid) so we'll see if it improves.

On to the infusion room and the port flush. By the time I go in its pretty much a full house. Lots of people, all shapes and sizes and colors. Old and young. Seems like cancer is an equal opportunity kind of disease. That's sobering. Some people are in obvious pain, others look resigned to their fates but most, as always, are wearing cheerful faces. Brave souls.

The nurse preps me for the flush. Hold down your shirt and she swabs your skin three times with beta dine and a couple of times with alcohol. Then she tells you to lean forward. Jab with the needle! Yikes! I guess she really has to do it that way to penetrate the top of the port. At least it's over in a minute. It's the weirdest thing. As soon as they access my port I am overwhelmed by the strong, kind of unpleasant taste and smell. The nurse tells me it's the heparin, still in my port from the last session. Hmm. It is a reassuring sensation because I know she was successful in hitting my vein. Yeah port! All of this takes no more than 3 or 4 minutes and I'm up and on my way. Not so for the many I left behind, some of which have 2 or 3 bags of chemo drugs still hanging on the pole by their reclining chair. All my best wishes for them all.

The infusion room

I've been wanting to mention this since my last port flush... Even though I was only in the infusion room for a few minutes what I saw made a big impression on me. It was a busy day there, almost every recliner was occupied. Men and women, I'm not sure if I've mentioned this before but it always seemed like it was predominately women when I was receiving chemo... There were probably a dozen people receiving treatment. It was obvious many were very sick. Several of them were bald and wearing those knit caps (like they put on newborns) cancer patients, including me when I was sick, always wear.

Even though most of these folks looked pretty sick they all were wearing cheerful faces. Damn, cancer patients sure are tough. I wish I could have stayed for awhile to speak with some of them. I'd be interesting in hearing their stories.

This is the two year anniversary (a couple of weeks ago really) of me beginning my ABVD treatments. It's kind of weird, the strangest things trigger a flashback to that time. Some of them include the Campbell's Soup jingle, the company (the name escapes me) that sells Halloween costumes and ALL of the darned political commercials. It was a govenatorial electon year when I started treatment and the commercials drove me crazy. So, here's a little list of some things that were true two years ago:

1. I was bald
2. I vomited a LOT
3. I weighed less
4. I had a blood clot in my left leg
5. I couldn't walk more than about 20 feet without assistance
6. I had two or more more medical appointments every week
7. I wasn't driving
8. I was isolated and lonely
9. I was terrified
10. I was taking warfarin
11. I was on extended sick leave from work
12. I took so many medications daily that Brad had to keep track of them on a spreadsheet

Ok, I'm done. All things considered, except for weighing more, things are looking up. 😃

Life with a port-a-cath

I thought I'd talk a little about having a port-a-cath. You may recall, I had one "installed" earlier this year to make my rituxan treatments go a little easier. The ABVD treatments I received two years ago for my classic Hodgkin lymphoma ruined my veins. Not getting a port then was a real mistake. Much of my anxiety related to those chemo treatments centered on the nurse being able to start the IV. That became more challenging as the treatments continued and became nearly impossible at the end. It's a real challenge for a phlebotomist to draw blood from me any more. So, when it became apparent I would require further treatment I agreed to get a port-a-cath.

Anyway... The surgery wasn't too bad. Well, except for freaking out a little over having surgery #7 and knowing there would for sure be a surgery #8 to someday have the darned thing removed. As I mentioned in a pervious post, I received my first rituxan treatment the day after the port was installed.  Since then, living with a port has been interesting. Here are some comments about the port:

• The port makes treatments MUCH easier. I have no doubt the nurse will be able to start the IV
• It hurts like a son of a gun for a moment, then it's over
• Occasionally I have pain in the area of the port. Short duration but sharp pains. I'm not sure why this happens but I've been told it is normal.
• The skin over the port is always kinda itchy. It's not red or irritated, just itchy
• It feels weird when I touch the area. Imagine having a bottle cap implanted under your skin :)
• It has to be flushed with saline and heparin once a month to prevent a clot from forming in it
• When I took a hot shower yesterday the port felt like it was scalding me! Ok Lisa, turn down the heat a little.
• Reading the above it may not sound like a port is such a great thing but I think the easy of starting an IV is worth it all.

The last time I had my port flushed there was a 60 something woman there having hers flushed too. She told me she'd had it for 10 years! Holy cow! Well, I have to admit, I'm not anxious to have mine removed. Life is uncertain, I might need it again even after I finish my two years of rituxan maintenance.

Easy as pie

My 1st maintenance treatment of rituxan went without a hitch. You know the drill by now, big dose of Benadryl, steroid and then the rituxan. I was optimistic when I said I thought we'd be done by noon. It was 1 pm by the time we left the infusion room. Then home to sleep, well, for the rest of the day. Today I'm kinda zipping around but there is so much to be done, this is not a bad thing. Dr. Kubba said everything was looking good - blood work normal and the recent good scan. I told him about how jumpy I'm feeling and he gently told me to get a grip. Good advice I'd say. :)

1st rituxan maintenance treatment tomorrow

Hello Friends,

It's been some time since I last posted here. I hope this finds you all well and happy. I've been busy and well. Summer flew by... Almost 3 months here at the ranch. It was a joy spending time watching the crias grow and puttering around with a modest garden and various projects. The new semester began mid-August. Seriously people, don't most schools begin AFTER LABOR DAY?! Oh well, we are now a good month into the semester and I'm settled into the new routine. I have felt reasonably well but I must admit, I'm "jumpy." I'm worried when I feel a little under the weather or have what I perceive to be symptoms, that the cancer is back. I'm sure hoping that this passes with time because right now it makes me feel a bit paranoid. Tomorrow marks the first of my rituxan "maintenance" treatments so oh joy, back to the infusion room I go. With any luck it will all be over by noon-ish and then we have the weekend to ourselves. It's supposed to be brutally hot so that should make working on our kitchen construction project very fun.  I'll post again tomorrow after I get home. As always, thanks for reading.

Results. Really

Ok, the results. I wanted to speak with Dr. Kubba before I wrote this to be sure we agreed on the report. It all looks good right now. A couple of small lymph nodes were noted near my iliac artery but they were quiet. There were two hot spots - the sites of my two recent surgeries. So, along the incision of my abdominal surgery and adjacent to my port. No mass was associated with either location and Dr. Kubba agrees these are inflammation from the surgeries. He explained that everyone has nodes that increase and decrease in size over time. As long as they are quiet in PET scans they shouldn't be a problem. Almost certainly this non-Hodgkin lymphoma will become active in the future but for now it's ok. Dr. Kubba does not want me to do another four rituxan treatments. He says there is no advantage in doing them now. Instead he is starting me on the maintenance course. I'll have one treatment every three months beginning on September 14th. I'll still have to have my port flushed once a month but it doesn't look like its going to get as much exercise as I thought it might.

And the results are in...

I had my CT/PET scan done on Wednesday July 25, 2012. In case you didn't know, the night before you eat an all protein meal. Absolutely no carbs because the point of the test is to measure the uptake value of the radio labelled glucose they inject - cancerous cells sucking up the carbs at a much faster rate than "normal" cells. You fast after dinner until the time of the test. Mine was scheduled for 8 am, check in at 7:30, wait around then it's show time. They tell Brad, "come back in two hours." Sigh, here we go. The nurse Ann, takes me to this little room in the back end of nowhere in the Radiology department. She's the one who actually injects the radioactive glucose into me. I ask if Caroline is working that day - she is... Happy days! Caroline is the nurse who can start an IV in me with absolutely no problem. They test my blood sugar levels to be sure it's where it needs to be for this test to work. It's perfect so it's time for Caroline to work her magic. And she does. First try, honestly I can barely feel it. I love Caroline. Oh yeah, and she's nice too. Lots of empathy and always asks the right questions to let me know she actually cares about her patient. Ann injects the radioactive crap into me then it's time to bake in the dark. They cover me up and turn out the lights. I have to lie there quietly for 45 minutes. Oh yeah, before they leave me alone I remember to ask them about Dr. No Personality. Do you recall the guy I was griping about the last time I had a scan? He comes into the room after the 45 minutes, no introduction - just says to me "get up." I'm thinking, "bite me" but I'm a good girl and don't actually say it. Anyway... Ann tells me - oh yeah, this man has no social skills. We agree and laugh. Well, after my little wait in the dark they come and get me and run a quick CT scan on me. No iodine contrast this time. Yeah! Out to the PET scan trailer now and by the time another 45 minutes passes my lower back is just killing me. Thank goodness this is done. I'm gonna break here 'cause I'm rambling and I'll do another post to talk about the results.

One PET scan, coming up

I'm scheduled for a PET scan on July 25th. Should have results early the following week. Nervous time. No barium this time - yeah! Just a quick CT scan for contrast then on to the PET scan. If you've never had to drink barium then lucky you. It actually doesn't taste that bad - honestly, it really doesn't taste at all. It's just chalky and... Viscous. Big ick! Other than being injected with radioactive glucose, the PET scan isn't all that awful. Well, if you can lie absolutely and completely still for 45 minutes. My understanding is that if this scan is clean then I start on the rituxan maintenance schedule. If the scan is less than perfect I get four more rituxan treatments then see what's going on before moving forward. BTW, all of the spring babies have arrived and they are beauties.

Low spirits

I'm happy to report things are kinda quiet right now. I don't see Dr. Kubba again until July 12th. I'm waiting to hear about a scan, CT scan I guess. Oh joy, I get to drink barium again! The thought of the scan makes me very nervous - scanxiety! You'd think there wouldn't be anything there but who knows. And if there is something there will they give me more rituxan or will they want another biopsy!? I have to admit, my spirits are kinda low - just waiting around for another shoe to drop. How do people do this?

Last rituxan treatment

At least for now... Dr. Kubba was on vacation so I had to see one of the other oncs before my treatment. He was 1 hour and 10 minutes late for my scheduled appointment. Finally, he walks into the waiting room - no explanation or apppolgy - just started asking kinda dumb questions 'cause he doesn't know me from Adam. You know me, I was not all warm and fuzzy with him, asked what I absolutely needed to know and off I went to begin my treatment. The nurse easily accessed my port with minimal pain - although you can see where she punctured it - and we begin with the steroid and Benadryl. Once that was done I felt kinda doopy but otherwise ok. It took another 2 hours to run the rituxan into me. There were no other ill effects. Yeah! We headed home and I slept for the entire afternoon. Damn that Benadryl! Took forever to wake up but one I did we finished shearing our alpaca Delight. She had a cria about three days ago and we had previously shorn as much off of her as we could a couple of weeks ago. It would be more accurate to say we hacked off what we could. So, tonight we cleaned her up and she looks lovely. Officially, all of the adult alpacas are shorn and tomorrow we will start shearing the new crias. My big concern there is that sometimes (rarely really but it does happen) the mom get confused after her cria is shorn and she rejects it. So far, knock on wood, we have always managed to convince them to take their baby back. That can be a very unpleasant chore. Back to medical stuff and sorry to ramble. It's 11:15 pm and for me that's pretty late. :) Anyway, I will be scanned in maybe 6 weeks, not sure if it will just be a CT scan or if they will do a PET scan too. Have I mentioned the word scanxiety? It's common among cancer patients - the dread and fear you experience waiting for the results of your most recent scan. I will experience scanxiety waiting for that one. Once we see the results we can decide what to do next. If it is favorable then probably begin maintenance rituxan therapy (one dose every three months). If it is not favorable, or possibly ambiguous then I believe I will have four more rituxan treatments just like the course I just finished.

Update on port-a-cath

My port-a-cath has been working well. There was quite a bit of swelling for several weeks after surgery but that has mostly resolved now. It is very easily felt on my right side, just below my clavicle. Kinda between my clavicle and my breast. It's like a soda bottle cap under the skin, about that size. I'll have to talk with the nurses about a schedule for coming in to have heparin shots to keep it from clotting while I'm between treatments, I sure want this thing to keep working. We will be going to San Francisco on vacation soon and I'm anxious to see if it's going to be an issue with the metal detectors at the airport.

And one to go...

On Tuesday, June 13th our brown female Snowmass XXXtremely Delightful delivered a medium fawn female cria. Her sire is Mr. Cash. Gestation was 371 days (what is with that this year??) and the cria was enormous. She weighed 23.4 pounds. If that's not a record for us, it's pretty darned close. The birth was a little weird. Usually, during delivery the cria's head is rather limp and kind of lolls around. Not this baby, she held it upright the entire time. It was kinda strange. There was no problem with getting her delivered and her mom passed her placenta about 1/2 hour later. The cria was up and trying to nurse within another hour. We've had some real challenges this year but this cria was easy. She is drop dead gorgeous. We are still thinking on names. Lady Hawke is about 1 week past her due date. Once she decides to grace us with her cria we will be done for awhile. We will have a big group to halter train this fall. They are very fun.

Quiet time

Im beginning to settle into my summer routine. I am SO lucky to have this time to myself. It takes a couple of weeks to get used to being home and I'm getting there. About the time I am really comfortable, it's time to go back to school, :) I am feeling well. I have the last of the first four rituxan treatments this Friday (June 15th) then (if I remember correctly) we wait a couple of months and do some scans. Depending on what happens there determines what happens next with my treatment. If they don't like the scans I believe I will immediately get four more rituxan treatments. If the scan is favorable then I think we will move to the quarterly maintenance rituxan treatments. Unfortunately Dr. Kubba will not be there when I go for treatment on Friday. Too bad, I have a pretty big list of questions. Maybe I'll ask the "fill in" doctor to pass my questions along to Dr. Kubba.

Third rituxan treatment

On Friday, June 1st I had my third rituxan treatment. It went well, the onc nurse had no trouble accessing my port. Whew. It took less than 3 hours to drip everything into me with no bad reactions. Yesterday with he help of several good friends, we sheared 13 alpacas. We've got a guy coming Thursday to finish the last 13 adults then I'll work on shearing the crias. I can't wait to be done. We are still waiting for the last two females to deliver their crias. Come on already girls!

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...

A whole bunch of biopsy slides in hand...

I picked up the biopsy samples/slides today from the Redlands Community Hospital pathology department. Wow! 11 containers with four slides in each. These are samples from my original biopsy and the new one. The package also included the immunohistochemical report (pathology 2nd opinion) and it says clearly this new cancer IS non-Hodgkin follicular lymphoma and nothin' else. Kinda hard to argue with that type of information. Ok, still working on the "full blown" 2nd opinion - can you say tumor board? Spoke with the proton radiation department at LLUMC today. The pathologist there wants to meet with me. I have ordered copies of all of my oncology files - those with these slides will go to them as soon as I get the rest of the files. I also registered for my upcoming surgery while I was the hospital. All we have to do on Thursday is walk in the door - and get cut. :) Well, I get cut, Brad just waits. Other than this baloney, life is fine. Still waiting on those darned girls to deliver their crias. The two youngest (both Hawke babies) are getting big and racing all around the place.

Nice weekend and rambling thoughts

What a lovely weekend we just had. The weather was perfect - mid-70s. We slept with the windows open. We got lots done around here. Brad began assembling the cabinets for the kitchen. They are very nice. We still need to find drawer pulls (Have you seen what they cost? It's jut insane)and pick out some granite for the countertops. There is still lots to do. Brad pretty much has the wiring done and all of the overhead lights installed. He put in the new "on demand" water heater. I've been working in the "new" spare bedroom. I had previously painted two of the walls a very pale gray (can't recall if I've already talked about this so forgive me if I have) and the window frames are white. I've been working on taping and mudding the drywall and I'm almost done. We moved the large metal storage cabinets out of the spare bedroom so we can spray he texture on the remaining two walls and then paint them. Once that's done Brad is going to put a wood casing around the closet door and we'll start working on he floor. It's gonna be epoxy with a metal flake in it. Kinda utilitarian but nice. We'll find a colorful rug to put over it. We found some nice honey comb shades in a darker gray color. The contrast will look great. I'll add a splash of color with the bed coverings. We'll have a little office in there too and a small living room in the front of that apartment to entertain our friends. In the kitchen we will start sealing wood for the ceiling. It's gonna be pretty much like what we did in our bedroom suite. I just love it. I saw Dr. Mehta Friday. He told me how to get samples of my biopsies. We talked about the possibility of my current cancer transforming into something more aggressive. That's certainly possible. I also worry about my Hodgkin lymphoma relapsing. That's certainly possible too. It's probably pretty reasonable to be feeling, well stressed right now. I am looking forward to another opinion. As I have said before, I just want to be sure the diagnosis is correct. I want to talk to some other doctors and see what they think I should do to treat this new cancer. I've read here is a chance to cure it with an early diagnosis such as the one I have. I want to persue the possibility rather than just going for a long remission with rituxan. I'm afraid if I have, for example a 7 year remission with rituxan, and then it transforms and becomes aggressive I may be too old to be considered for an ASCT. I am dreading the surgery to install the port-a-cath which is coming up on Thursday and then on to my first rituxan treatment the very next day. To say I have some anxiety would be an understatement. I am hoping that incredible nurse Phoebe will be there to put in my IV for the surgery. I'm also hoping the anesthesiologist uses vercid again. I do NOT want another alien abduction memory! I'm sure it's an outpatient procedure so I will get to go back to our comfortable home when it's over. Friday is going to be a LONG day. It will probably take 6 or more hours for the rituxan treatment. They really worry about allergic reactions, particularly the first time. I've read they will give me a hefty dose of IV Benadryl which will likely knock me out for most of it. I've been thinking of getting numbered tattoos for all of my surgeries. Where to put the number for the tonsillectomy is a litte problematic. Oh forget it, it was just a bad idea. :) We have several alpacas due to deliver. Sure as hell they will all wait until I'm in surgery or having my treatment on Friday to deliver. The following females are due: Sehiya bred to Mr. Cash, Lady Hawke bred to Mr. Cash, Ana bred to Snow Hawke, Sweetie bred to Mr. Cash, Blueberry bred to Mr. Cash, Roen bred to Mr. Cash, Delight bred to Mr. Cash

1st day back

Thank goodness it's over! Everything went well. The students were very sweet and I was glad to see them. Carole, Renee and all of my student assistants did a great job while I was gone. I really appreciate their efforts. My office was in order and everything that needed to get done DID get done. A girl couldn't ask for much more than that. I returned to lovely cards, two gorgeous origami roses folded by student assistant Paul Jang and an amazing Edible Arrangment that I understand was the brainchild of student assistant Sean O'Hair. I have an appointment to see Dr. Mehta Friday morning to talk about getting a full blown, second opinion. I'm hoping either he,or Dr. Kubba will arrange for all of my records, slides and tissue samples be assembled for a tumor board to evaluate. I'm nervous about the upcoming surgery to implant a port in my chesT. I understand infection isn't as likely with this sort of port but what if I develop a blood clot or it just stops working. I need to learn how to maintain it. Ick!

Back to life

I'm back to work tomorrow. I'm ready. We have four more weeks until the end of the semester. Carole and Renee did a great job of covering me while I was gone but it's time to step back in and finish things up. I'm looking forward to seeing my students and I know I have a stack of about 60 research papers to read. Oh joy! Renee and I will continue to pack and move our offices and the microbiology lab into our new space. The next month is gonna be busy. I'm not sure if I mentioned in my previous post but I will just receive one rituxan treatment for now (May 4th) and we will wait to continue the treatments after we get the second opinions on my case. I'm nervous, and a little bit glad I'll be getting a port installed. I'm NOT happy to be having another surgery but I am happy I won't have to freak out about the IV for every treatment. I'm anxious to get the second opinion... I'm worried the local pathologist could be wrong and I actually have some horrible, aggressive, terminal lymphoma. Sorry, don't mean to be paranoid, just want to be sure :)

More news and more questions

We (Brad and I) met with Dr. Kubba and Dr. Rau today. We met with Dr. Kubba this morning. He confirmed what we'd read in the biopsy report - non-Hodgkin B-cell follicular lymphoma. He had no idea if it was there with the original hodgkins or if this is a new cancer. He thinks it's new. This is really very weird. While this variety of non-Hodgkin's is pretty common what isn't common is it developing after having classic Hodgkin's. More on this later. Anyway, assuming this new diagnosis is correct Dr. Kubba said the prognosis is excellent and represented this type of cancer as moderate or even low grade. I am stageI/II (likely I) and grade 2. The grade 2 thing refers to some physical characteristics of the sample. I'm still learning about grading non-hodgkins. Dr. Kubba said we will get a second opinion on how to treat my disease. There are several treatment options available but he thinks a monoclonal antibody called rituxan WITHOUT chemo is the way to go for now. It targets CD20+ receptors on both cancerous and non-cancerous B cells. He believes the cancer is indolent but if that changes we may have to also step up the treatment. My understanding of what will happen now is this: port-a-cath (OMG, ick!) inserted on May 3rd. On the next day I get my first rituxan treatment. There's good and bad news here too. Should be low side effects - no vomiting or nausea (Really??) and no hair loss. Possible bone pain and fatiue. Oh yeah, one other thing. A fatal brain infection is possible too but that hardly EVER happens. Holy crap! The first rituxan treatment is a bit tricky. There is a big long list of unpleasant things that can happen during the infusion (4-6 hours) and in the first 24 hours after its done. Hardly any serious problems if you get thru that window with your pants on (so to speak). I will receive 4-8 of these treatments, 1 week apart then I'll get additional treatments once every 3 months for a total of 2 years! IF my original Hodgkins doesn't relapse and IF this new cancer doesn't become aggressive I could live for decades. Wow! I want to discuss having the two biopsy samples (original diagnosis and the recent sample) evaluated by another pathologist that specializes in lymphoma but will do that in my next post. More about meeting with Dr. Rau in my next post too. I'm pooped. The last couple of days have been challenging.

Good news and bad news...

Well, it's mostly bad but it could certainly be worse. I finally got my hands on the preliminary biopsy today. I have cancer again. Damn. Kinda weird though... I have not relapsed but rather have a new cancer. Still lymphoma but now I have non-Hodgkin B-cell follicular lymphoma. The good news is that it is likely indolent (slow). We are still waiting for the final biopsy report and then can be sure but right now it is looking indolent. That means I may live for many years BUT I will need treatment (right now it sounds like a combination of monoclonal antibody therapy combined with chemo). This treatment is gonna kick my ass but it's not like i really have choices. :) I will probably need to be treated on and off for the rest of my life. There is a chance the cancer may become more aggressive at some later date. That would mean more aggressive treatment. Dr. Kubba stressed a couple of things to ease my mind. 1. He won't need to take a bone marrow biopsy - yeah! 2. I am not going to need a stem cell transplant, now or almost certainly in the future - YEAH! Dr. Mehta and Dr. Kubba went out of their way to call me personally today and to try to put my mind at ease. I can't express how much I appreciate them both.

Stick a fork in me

'cause I'm done... Sitting still anyway. This is a frustrating time. I'm feeling pretty well but can't do much because of the surgery. We went out for breakfast this morning, that was a nice diversion. I'm off work until 4/20/12. This is gonna be a challenge. Carole is working her butt off covering my classes and I'm bored. I'd better hope she doesn't read this. :)

Rookie mistakes - part 4

If you are going to have chemotherapy, get a port. I did 6 cycles of ABVD (which is actually 12 treatments) and I chose not to get a port. I was afraid of the port. It gave me the creeps. I was terrified of it becoming infected. That turned out to be a bad decision, both short-term and long-term. The first few chemos went pretty well with my then virgin veins. As my course of treatment progressed getting an IV in me became more and more of a challenge. Trust me, those oncology nurses are GOOD but chemo is so damaging to your veins that it's a down hill spiral. I even had to postpone one treatment because the nurses just couldn't get the IV started. The other thing I didn't consider was - the rest of my life. Even years after completing chemo your veins do not improve so every subsequent blood pull or IV you need is going to become an ordeal. Just get a port. If you do decide not to get a port when you have blood pulls or IVs in the future insist on only the most skilled person trying. Do not accept it when the nurse says that she is very good. Ask for a phlebotomist or whomever else is the most skilled person in the facility. You should not have to be tortured to allow another person to indulge their ego.

Rookie mistakes - part 3

Prolonged vomiting after chemo is NOT normal. I know that before becoming a cancer patient I always equated chemotherapy with vomiting. Don't get me wrong, I did plenty of vomiting during chemo but after my second treatment I vomited and was unable to keep anything down for three days. I couldn't even get out of bed. I wound up in the emergency room with a massive DVT in my leg. It was painful and terrifying. It was a major setback for my recovery. When my oncologist learned what happened he asked why I hadn't called him. I had no clue this wasn't expected. He said that if I had called he would have had me come to his facility for IV fluids and IV anti-nausea drugs. I had no idea. If you are experiencing prolonged vomiting, call your oncologist. After that rough spot things went much smoother. It's different for everyone but my "normal" after chemo was to experience nausea and vomiting about 4 days after my treatment. I would just wake up vomiting BUT after a brief bout it would pass and I would be ok until the next morning. 

Rookie mistakes - part 2

If you require opioid pain medications you almost certainly will become constipated. Just assume this is true and be proactive. If you are able to eat be sure to have enough fiber in your diet and ask you doctor about taking a stool softener such as Colace. Manage the constipation before it becomes a real problem. You might also consider a product such as miralax. Be careful about overusing laxatives, they are "addictive" and this is not something you want to have to take for the rest of your life. 

Cancer: Rookie mistakes and how to avoid them - part 1

When you have chemo you will most likely loose your hair. It's really not that bad but it certainly does contribute to you not feeling "like yourself." What bothered me most was all of the times people called me "sir." I am female and given my build my gender is not very questionable. I wasn't comfortable wearing a wig. The darned thing was scratchy and I was afraid it would fall off. I realize that wasn't likely but I couldn't shake the feeling. Also, when I looked at myself in the mirror with a wig on it just didn't look right. I either tied a scarf on my head or wore a cap. It's funny how many times people don't really look at you... Near the end of my treatments I felt well enough to drive and even make short forays into the world. One day I went out to buy a pair of shoes (my shoe size increased at least 1/2 size and very few shoes were comfortable at this time). I picked out a pair of shoes - obviously women's shoes - and when I paid for them the checker called me sir. She never even really looked at me. I'd imagine by baldness, the cap and the tiny earrings I usually wear confused her and made her uncomfortable. I have learned since then to wear larger or dangling earrings to avoid confusing people. 

Home again!

We just arrived home about a half hour ago. How wonderful! Thank you to everyone for the great cards and emails. I pretty much had a running dialog with Sara Jane by email the entire time I was gone. Carole and Bud are coming to visit in a few hours and Lori Arnold is bringing us Easter dinner at 2 pm. There was a great card waiting for me from Ruth, David and Caitlyn Gomez when I got here. I certainly am lucky to have such great friends. BTW, Brad survived his food poisoning. :) I'm feeling pretty well, minimal pain. Mostly just discomfort like when you do too many abdominal crunches. I've got two cats curled up next to me on the bed and I survived being greeted by our sheltie Jazzy who always jumps right on my stomach when I've been gone for any length of time. Well actually, she does that every time she greets me.:) The new babies look wonderful and I was impressed with the work Brad got done in the kitchen while I was gone.

Clarification of my last post!

When I said we mutually pissed each other off I meant me and the hospital staff, NOT me and Sara Jane. :)

IV Anxiety

What follows is an excerpt of an email to my dear friend Sara Jane. I hope you'll all forgive me for ranting. We mutually pissed each other off yesterday. Don't recall if I've mentioned that pretty much all of my veins are destroyed from my previous chemo. Pulling blood, and even more so, setting an IV has become a huge challenge and an enormous source of anxiety for me. An absolute angel in pre-op got it started Thursday. My heart sunk yesterday when I saw it had blown. Surgeon wanted another put in. They were giving me minimal fluids but the pain meds were administered by IV. I have also developed intolerance to most oral pain meds - excruciating pain in my diaphragm area followed by violent vomiting. Not so fun. Anyway, I was promised that someone most especially skilled in this art would come replace the IV. When she arrived I explained my anxiety and she assured me she "was awesome" then proceeded to JAM the needle through my vein, into my muscle and when that didn't work she kept moving it and jabbing around the general area of my now growing new hematoma. Well, that pissed me off so I ordered her out of my room and forbid her to enter it again. Some muckiety muck came in and said they were sending up someone with an imaging device to put it in. Two hours later they come back and tell me, sorry - that department is closed so no go. Awhile later a gal from ER comes in, examines my veins, turns and runs for her life. By now I am PISSED and in pain. I start to create a stink, insisting on filing a formal complaint. By now everyone has decided that maybe we should just skip the IV :) but they had to call the Dr. four times before they were able to figure out a pain med that I could tolerate. I'm hurting pretty bad by then and I hate the world. Finally got the pain med down me and I also submit to taking an Ativan (sedative/anti-anxiety drug in case you don't know) Oh yeah, and poor Brad is home with nasty food poisoning and we have a girl (late term pregnant) who is worrying us so maybe you should just come and kill us both. Seriously, if you are really my friend you would do this for me. :)

Still kicking

Here I sit in my bed at Redlands Community Hospital on the other side of my surgery. I can't beieve how little pain I'm experiencing given the size of the incision. Everything went well EXCEPT Dr. Rau told Brad the lymph nodes he removed looked like Hodgkin's nodes, not scar tissue or inflammation from an infection. Definitely NOT what we were hoping to hear. No comes the long wait - until we get the pathology report. Sigh. On the bright side, as I said, the pain is minimal and I was able to walk around the floor twice with Brad and I can get in and out of bed on my own. Because I'm doing so well Dr. Rau bumped me up to solid food. Yeah, no broth and jello. :) Renee and Brad have. Other brought me the most lovely flowers and my BFF Carole will be here around noon for a visit. Its wonderful to have so many great friends. In addition to visits from Carole, Bud and Renee I have heard from Lori Arnold, Sara Jane Mclennon and Jackie B. Ok, so when will they spring me from this joint??

Biopsy surgery today

My surgery is scheduled for noon today. We have to check in at 10 am and then Dr. Rau does his thing at noon. It's expected the surgery will take about an hour and a half. I can't believe this is happening. It's like a very bad dream and I can't wake up. Speaking of bad dreams, silly ones anyway... I dreamed I forgot I wasn't supposed to eat today and I had breakfast. I woke up in a panic. :) Carole and Bud will wait at the hospital with Brad today. I sure appreciate them. I also appreciate all of the lovely cards and emails of encouragement people have been sending. Thank you very much. It's good to know people are thinking about me. My favorite was from Sandy Wallace and Michael Frankel,because of the stamp. It was one of those custom made stamps with a photo of them both riding camels. They went to Egypt a few months ago - my fantasy trip. I will be in the hospital for 4-5 days so hopefully home by Sunday or Monday. I have to mention an alpaca thing. Our female Foxy was due a few days ago. We were worried she wouldn't have the cria until I was in the hospital. I was out in the pen visiting with her and the other pregnant girls this past Tuesday and I told Foxy "I sure wish you'd have that baby now so I don't have to worry about you while I'm gone." I went back into the house and about 1/2 hour later I heard her complaining loudly. I looked outside and it was obvious she WAS in labor. A few minutes later and out popped two little white feet. I helped her a little and we delivered a gorgeous white female cria! She was up and nursing within 1 1/2 hours. What a relief! Her name is AVC Hawke's Electric Daisy. Daisy to her friends. I'll post a photo of her when I can.

Tuesday on Saturday

That IS a strange title for a post but... The alpaca female, Breezy Tuesday... The one I thought might have slipped her pregnancy... She delivered a gorgeous white male cria at about 5 am this morning. She gestated for 368 days (342 is more typical for alpacas) and whadda know, she WAS pregnant. :)

Meeting with Dr. Kubba

We met with Dr. Kubba to talk one more time before my surgery. He said my blood work looks excellent and was not able to find any abnormal nodes upon palpation. That's all good... He previously has told me that it's not really significant that I feel WELL or that my blood work is normal but the further away we get from the scan the more significant he seems to think it is because I would probably be experiencing some "B" symptoms by now. (night sweats, fevers, weight loss - I wish, etc.). I have to admit, I'm encouraged. I keep reminding myself that most hodgkin's patients are actually cured with the first line chemo. I SO want to be one of them. We also discussed what will happen if my biopsy is unfavorable. Just as I have read - what they call "salvage" chemotherapy (that just sounds awful, doesn't it?) to get me back into remission will come first and is preparation for the transplant. I would then be given other strong chemo agents to stimulate the release of stem cells in my marrow to be released into my peripheral blood. Those stem cells will be harvested and stored. Then follows the fun, high-dose chemo and total body irradiation to kill any lingering cancerous cells and to destroy my marrow. After this, my previously harvested stem cells would be returned to me by IV. With any luck the new stem cells would engraft in my bones and begin production of WBCs, RBCs and platelets beginning 10 - 21 days after the transplant. This I would like to avoid. Still no crias. Just in case you don't know me and have just happened to stumble upon my blog you should know, my husband (Brad) and I raise alpacas. We currently own about 30 of them and we are expecting approx. 9 crias between now and the end of May.

Weekend away

We returned home a few hours ago from a very fun weekend "away." We have girls due so we didn't want to go too far away. The compromise was to go to Anaheim where we stayed at a nice Marriott. We did some shopping at South Coast Plaza and spent two half days at Disneyland. It was wonderful! Still waiting on those crias.

Lock and load

I just LOVE it when Denny Crane says that...

Had a chest X-ray today and yesterday blood pulled to run all of the pre-op testing. I registered at the hopsital for my surgery so we just have to check in on the "big day." When I registered with admitting the gal gave me a bottle of very creepy antibacterial body wash to use when I shower before going to the hospital. Oh boy. LET'S GET THIS OVER WITH!

We are waiting for crias right now. Roberta's girl Tuesday is past due (did she slip her pregnancy??) and our beautiful Foxy is just due with a Snow Hawke cria. I am SO hoping the girls behave and have their crias when we can be here to help.

Tests, tests and more tests!

I met with Dr. Mehta yesterday afternoon. It was nice to see him, it had been awhile. We talked about whether or or I was making a good decision in having this surgery and we both think I am. This is not to says that I'm not extremely anxious about it. I expressed the concern that Dr. Rau wouldn't find anything when he got in there. Dr. Mehta thinks he will and said Dr. Rau told him he planned to sample a variety of tissues during the surgery to obtain a good sample. Ick! Would someone please wake me when this is over? Apparently it will take from 1 - 2 weeks to get the pathology results back. I'll just be barely getting back to work by then. While I was there they ran an EKG and the results were good. I need to get blood pulled and have a chest X-ray this week too. I also met with a new optometrist today. She was very nice and gave an impressive exam. I'll be trying a new brand of contact lenses that are designed for folks like me who sleep in their lenses. I also ordered a nifty pair of new glasses. Tomorrow I am off to the dentist to start the last "project" in my mouth - replacing an old crown. Chemo was awful on my teeth. So far I've replaced a major bridge, had major work in my front teeth and replaced 2 crowns. Even with our great insurance this has been a big investment.

Pre-op meeting

I have an appointment on Monday with Dr. Mehta to take care of all of my pre-op testing for my upcoming surgery. They will do blood work, an EKG and I think arrange for me to have a chest X-ray. I have an eye exam that morning too and a dental appointment on Wednesday. I'm trying to take care of everything possible before surgery. Sounds like fun. I am just beginning Spring break. 10 days off, what a great concept!

State of mind

Just thought I would say a little about where my head is right now. The first thing I have to say is how much I love my husband Brad and how much I appreciate all he does for me. Brad is always there when I need him. He is by my side at all of my doctor appointments and he is my strength. Since learning of the suspicious nodes late last December I have been pretty freaked out. Pretty much curled up in a ball and "not accepting new information" scared. Recently... I feel better. I've worked thru a lot of the "issues" in my mind and we have begun putting a plan into action. With any luck this will be a false alarm and we will get back to our lives. Fingers are crossed.

Meeting with Dr. Rau

We met with Dr. Rau yesterday. My surgery is scheduled for April 5, 2012. I was hoping this surgery wouldn't be as invasive as the original biopsy but no such luck. I will be in the hospital for 4 - 5 days then 2 weeks at home to recover. It will probably be 2 - 3 weeks before we have biopsy results. As you may know about me - patience is not my best virtue. :)

And it begins again

I find myself having to come to terms with likely fighting round two of "Lisa versus Cancer." I had a CT scan late in December 2011 that showed some enlarged lymph nodes in my groin. This led to my oncologist ordering a PET scan which took place in January and showed some new, active lymph nodes next to my iliac artery - pretty much the same area as my original cancer. While the nodes in my groin were enlarged they weren't "hot" on the PET scan. Maybe the cancer is limited to the one area. Here's the rub... Because of the location of the suspicious nodes the only way to get at them for a biopsy is excisional surgery. Oh joy! I meet with the surgeon, Dr. Richard Rau this Monday, March 12, 2012 at noon. We will schedule my surgery then and find out how much this is going to disrupt our lives and my classes. This will be surgery number six. I wonder how many of my former students I'll see this time at the hospital? :)