First Round of Chemo 11/26/13

Welcome back after a little bit of non-posting. If you are reading this blog post after post like watching a TV show on Netflix, thank you for your continual reading; I promise the cliffhanger at the end of the season will leave you wanting more.

This day started off a little weird. I woke up early, around 3:30-4 am and came upstairs. I cleaned a bit then got cleaned up myself and got dressed. Patti was quite the opposite and wanted to sleep more (just another 5 minutes please!). Usually it's quite the opposite, maybe it has to do with her 'big day'. After forcing her out of bed I went to get gas and some breakfast for us and came back to them halfway done getting ready. A little while later and we were dropping Aiden off at preschool and were on our way to her first chemo session.

I am going to stop right here and say something about what not to do the night before cancer. I was shown this video and it hit me right in the feels and is not good for someone with a spouse that has cancer.

Patti found out the day before that she was not getting the 'Adcertus' chemo drug and that she would be receiving the standard 'Bleomycin' instead. Even though she isn't getting that new one, she is still in the experimental program so they can compare the effectiveness of both drugs. That means two things:

• She will not get a lot of extra tests
• If she was taking Adcertus she would have extra blood draws and other tests so the sponsors could get extra results for their study.
•  Her chemo will be slightly more regimented than normal.
• She will have more paperwork from time to time to tell Dr. Herzan how she is feeling
• The drugs will be administered in the order of ABVD
• They wanted to do a Bleomycin test (I'll explain that later) first, but because she's in the program she had to have the Adriamycin first.
• There's an extra vitals test which has to be administered an hour after all the drugs have been given, again because of the program.

Me: Let the Fun begin
Patti: The suspense is killing me
Me: No, that would be the cancer
Patti: OOOOoooooo

We checked in at just before 8 am at the Masonic Cancer Center and had the needle connected to Patti's port for blood draws and chemo. After the blood draws were done we met with I think our main chemo nurse: 'Tonya'  and she went over a few things, not a lot since we already had a lot of the information from Dr. Barachova and Dr. Herzan. We went over the anti-nausea medications that we would be getting (I will talk about them later). While we were meeting with her Dr Herzan who is in charge of the study came in with more paper work and collected previous ones.

When that was all over we waited for over an hour to be called up to the third floor for chemo. Our Nurse for the day was Amy and she welcomed us to our curtained off room and talked us through the process. Patti would be getting the four drugs: ABVD in that order so they matched up with the experimental drug process of AAVD. She also would be getting Vinblastine instead of Vincristine but they are basically the same drug. Before we began they took her vitals to make sure she was alive. Then they pumped a small amount of saline through the port to flush it. The most interesting part about it, which Patti hates it when I call it interesting and not disgusting, is the fact that she instantly could taste it as soon as it entered her blood stream. What it does is make her have a metallic taste in her mouth which I'm told is not very pleasant and can be counteracted by something citrus or minty because they are usually very strong as well.  She then was given an anti-nausea medication that will last for for a few days. After that came the chemo drugs YIPPEE!!!!

The first drug is Adriamycin, it is red in color and this one has to be 'pushed' through. The nurse came in with two large syringes  without needles because at this time Patti was hooked up to the IV unit and the syringes would connect to that instead of directly to the port.

With each drug the nurse has to double check with another nurse that the drugs are the one for the patient. They read off the patient's name, date of birth and the drug #. It is very quick and professional and insures the patient's safety.

Getting back to the process, like I said this drug needed to be 'pushed' through. This is because it can cause burns if it leaks out and they want to get it all in there quickly. What they do when they 'push' it is pull back in the syringe a bit to pull some blood out, push some of the drug in and rinse and repeat until the syringe is completely empty. They then ask how the patient is doing and proceed with the second one. It took no more than 5-10 minutes until Patti had the first drug done and over with.

Between drug #1 and drug #2 Patti used the Potty hahahahahaha. She has to drink 64 ounces of water a day, she actually was ahead of the curve so luckily the IV unit is very portable.

Bleomycin is the second drug. This is the one that can cause lung infection and deterioration in 10% of patients. This is why they test vitals and part of the introduction into the chemo process was the stressing of: if you feel unnaturally winded, if your short of breath, etc. call us ASAP! If we weren't in the program, we would have gotten this first because of the process of taking it the first time. The normal dosage is 24 units (I don't exactly know how much is a unit, that's just what they said). The first time they give you Bleomycin they give you 2 units of the drug first and then make you wait an hour to see if you have an allergic reaction to it. After the hour was up and Patti felt cheery and perky, they continued giving her the other 22 units. It took about 20 minutes more to go through it.

The third drug was Vinblastine and it was gone before we knew it. They came in after the Bleomycin was gone, asked Patti how she was doing, hooked the new drug up and within 15 minutes it was emptied and in her system. This drug is one they use a gravity feed for. But wait, aren't all IV's gravity fed? Well with this drug they had it pump in very fast, basically having the IV pump push it through her system because this is another one that may cause burns.

The last drug was Dacarbazine and it was a regular IV drip baggy that took about 45 minutes to be completely used up. This was really anti climatic since the other ones were so darn quick and because of it we actually got kind of bored waiting for this one to finish.

A couple things happened while Patti was getting the drugs:

1. Between each drug the nurse would hook up the saline syringe to the port, not to pump more saline in, but to pull back just a bit to see blood to make sure the port was clear and there were no blockages.
2. We got her chemo schedule
3. We got Patti's other anti-nausea medications
1. Dexamethasone: A regimented drug she needs to take certain days after each chemo treatment session. It helps fight any nausea or dizziness symptoms
2. Prochlorperazine: This is a drug she uses as needed for nausea and vomiting
3. Lorazapam: Another 'as needed' drug for anxiety, nausea, vomiting and for sleep

For the the last two she needs to find the combination through basically trial and error that works best for her to combat those symptoms and call the nurses if she needs help with proper combos. As a non-gamer I doubt she knows really how to use an effective combo to knock anything out.

So after the chemo drugs were all in her system, Patti had to wait for an hour. This is part of the program she is in for that new drug that she didn't get. For a long boring hour we waited until the nurse was allowed to check her vitals again.

The reason for part of the tedium of the chemo process was that the wifi on the third floor, you know....where people spend a whole day getting chemo...is very spotty at best. It took me 4 hours to watch a 2 hour movie. You'd think a place where patients need to spend long hours, they'd make the wifi a bit better so people can better distract themselves, especially since their TV channel selection is horrible. How about we raise money so they can afford to put a few signal boosters in that area!!

Since we got the chemo schedule, we were allowed to leave immediately after the vitals were taken. There are no side effects that take effect quickly so Patti right now is her normal happy self. Most of them will take 3-4 days to manifest if they do at all so now it's just a waiting game. Her next two chemo dates are December 11th and December 27th both early morning. The second one will be very similar to this one with her getting vitals before and an hour after. The third one and the ones following will be much shorter.

Thank you for reading!

PS: We just realized something, I'm not going to go back and fix this post because I love adding PS's. The reason why Patti is so happy and cheerful is because the anti-nausea medication that Patti received is a type of steroid that pumps her up and makes her feel more energetic. That's why she's so abnormally perky right now. Thank you Robyn for pointing this out, she was kinda freaking me out.

Normalcy this week causes boredom in blog writers

This week is the last normal week for about 6 months and besides the belated results posts there is little if anything happening this week. Patti is working a full 40 hours and seems to be happy as ever to going back to the basics. After next week I will be going on overnights for a month so that is exciting... By the end of December, by the start of the New Year, Patti will be 3 treatments in or have 1 1/2 cycles complete with only 4 1/2 cycles to go! By May we might get the news that she is in remission.

Now what to do in the mean time...I kind of like this blog and the writing it entails so a whole week of nothing gets a tad boring. Add to this my phone goes on the fritz causing me to have to replace it sometime soon; apparently being out of contact is detrimental when the first chemo session is days away.

First, a shout out, we got a dinner made for us by friends of my sister Wendy. It was delicious and was gone wayyyy too soon. 

Second I was asked a few times whether I just remember everything or if I take notes or if I just summarize from paperwork given to us. I would say 80% of it is memorized from what the nurses and doctors tell us. 19% is from the paperwork given to us (especially drug names and side effects) and 1% comes from notes. The only day I took notes was the day we got most of our results, last Tuesday:

As you can see it's little more than chicken scratch and its the only page of notes i took in the hours of information we got. Halfway down when they were talking about drugs, if you can see I say: "Way too much info read paperwork later". I then went mostly back to paying attention. For that post most of it was from memory, the links were just made to help people reading, and I looked at the paperwork for proper spelling of certain terms and drug names.

I have a really good memory, not photographic but it's very, very good. Our quick 5 minute visit to Dr. Hamler's office to get all the information about the biopsy on Patti's lymph nodes, we got crammed full of a lot of information about the procedure, where we were supposed to go, at what time, how long it was, etc. and were promptly rushed out the door so we could run back to the hospital (we were hours later than we thought we would be at the hospital already). When we got back and we were asked by Dr. Hanzen how it went, I was able to spout off all the information we had gotten from Dr. Hamler. I am not tooting my own horn, just explaining how I write the blog.

When I sit down to write the different posts, I take all the information from various sources relating to the particular topic and I try to set it up in chronological order as best as I can. Also I ask for Patti's input as well since this is all about her, her feelings, what she went through if I wasn't there, etc. I also include helpful links to some topics that relate to the post, especially if I don't want to make long posts longer. Some information isn't exactly needed to get the point across so links help those who want to explore further.  Some of it is harder to write than others, I am talking about my wife here. Luckily she hasn't had a whole lot of pain, but it has worn her down at times and we haven't even gotten to the chemo. She does plan to make her own posts, when that is, I do not know. I can't imagine collecting your thoughts on something that is currently trying to kill you. That sounds harsh but it's reality, a reality that we are going to crush because the only good cancer is a dead one.

There's no real good way to to end this post so I'll leave you with this:

Results are in, apparently she has cancer.

So the results are in but let us look at the stages of the Hodgkin's...
Stage 1 of Hodgkin's Disease is the very early stages of cancer developing in the lymph nodes or an organ, almost always in the upper parts of the body.
Stage 2 is the start of spreading to multiple lymph nodes.
Stage 3 is the cancer spreading to below the diaphragm.
Stage 4 is the cancer now spreading out of the lymphatic system and infecting other tissues, multiple organs, etc.
You can find the info at the Cancer Center .

Patti has Stage 3a Hodgkin's Lymphoma. What does this mean? One of her first tests was a PET scan that allows the doctor's to see where the cancer has spread if anywhere. It first started in the now large lump on the right side of her neck. It has spread to almost ring the entirety of her neck; there is one area in each shoulder; a large spot near the heart and finally two nodes near her pelvic region that are in the early stages. 3a means that it has spread below the diaphragm but only just. Is it serious? Cancer is always serious, but luckily we still caught it while it's only in her lymphatic system and not spread to her other organs and tissues.  Now we have to start chemo.

What is Chemo? I've known for years the vague general meaning of chemo: The use of it may cure cancer, but also makes the patient weak and disoriented.

The Oncologist trying to explain it the first time with the two different treatments got me a bit more confused:

'The drugs ABVD or was it ABBD no it was ABVD gets replaced with ABAD no no it's AAVD."

Sorry Pat, I cannot solve the puzzle.

Standard Order of Chemo Drugs:

Adriamycin
Bleomycin
Vincristine
Dacarbazine

Experimental Order of Chemo Drugs:

Adriamycin
Adcertus
Vincristine
Dacarbazine


So the difference is just one drug. That difference, though, eliminates a side effect that can be very dangerous: deterioration of the lungs which can be caused by the use of Bleomycin in 10% of patients. Now the treatment of ABVD has been used for decades and is the standard way to have this particular cancer go into remission and then cured. AAVD is a relatively new treatment process still in the experimental stages in the USA, although it has been used for years in Europe.

Now just wait, before you say: "Why would you risk your wife's life on an experimental drug?" Let me explain:

First and foremost this is Patti's decision, I may put in my advice but she makes the final decision.

Second and and most importantly, it has been in use for years in Europe and is only being experimented in the USA because it is new. It is in Stage 3 of 4 of testing which basically means it's ready for common use. It seems drugs of these types rarely get to Stage 4 because that usually means they are searching for multiple ways of consumption, pills, injections, etc. and it won't get that far. There are 10,000 patients in this chemo treatment plan. Not everyone gets the new drug and we don't know if we get it yet either. 50% get the old way, and 50% get the new way to see how effective it is. We won't ultimately know until they put Patti's name in the randomizer 48 hours before her chemo. We will be told the drugs that we are getting, there is no sugar pill, no matter what treatment we get, Patti will be getting chemo.

Each drug comes with it's own side effects and there are a lot of them: Fatigue, nausea, White T-Cell count lowering, etc. There's even one that may cause constipation and another that may cause diarrhea; that should be an interesting experience. I won't go into all of them but if you want to know more, the Cancer Center can teach you more. One of the things that affected me the most was the chance of infertility. As a father of a beautiful boy I always thought we'd have at least one more child, hopefully a girl and hearing that there is actually a good chance we can't have anymore is kind of hard to take. Patti actually seemed to take it in stride saying we could always adopt. I won't speak to how she really feels because as a husband and a man I wouldn't know how she is feeling about it, maybe she should do her own blog post hmmmmmmm? :)

Sorry, bad version of the 'Meow' joke

So back to the treatment process. Our particular path is that she will get 6 cycles of chemo over 6 months. Each cycle consists of two treatments every 14 days. It doesn't have to be exactly 14 days but near enough so as the old chemo drugs are exiting the system the doctors can push through the new ones. Being apart of the experimental drug program, we will be called in extra days to get tests done, especially if we are on 'Adcertus'. The first day would see us getting chemo and the second day for sure will see us back getting blood tests. There may be more tests that second day or we may be called in for a third day for more tests. So twice a month or every two weeks we will be down there to receive the chemo, so about 4-6 days per month will be spent at the hospital; man I've said Chemo a lot this post...chemo chemo chemo...CHEMO.

The most noticeable effects will be fatigue and hair loss. The other side effects will only last for a little while after the drugs are injected but all of the ones she gets will build up over time and of course you can't exactly grow your hair back between treatments. The doctors assured us no one gets all the side effects and they vary in their strength, they'll come and go but they are accumulative so even though Patti may get closer and closer to being in remission she may start looking more and more worse for the wear. Of course knowing Patti she might shrug off chemo like it's a minor inconvenience so here's praying that it's the latter.

So over these 4-6 hours Patti will be in a very large room, basically a lobby full of chemo'd up people separated by curtains for a bit of privacy. There are snacks, drinks, comfy chairs and nurses all around to make sure everyone is doing alright. Each drug will either be dripped in or pushed through. The reason for some drugs being pushed through is the fact that they actually have a chance to cause pain in the form of possible chemical burns if anything gets on the skin. With the port that was implanted this makes the chances smaller that Patti will have this reaction but there is still a small one that some droplets my leak out right around the port area. With the other drugs they are pretty much harmless going in so they will be put in via IVs.

During this time family and friends can come in and visit. If you want to comfort Patti, talk, chat, giggle, feel free to stop on by. No one is obligated to stay more than they want, don't feel guilty even I might go into work for a few hours so I don't use up all my sick time :) but also don't be afraid you are intruding: call, text, email, FB, whatever, if you want to stop by and if Patti is feeling up to it she will love to have people to talk to! We will post the dates as we get them with the first being November 26th. We'll also tell you when we're there, where we are and how long about we will be there. Just remember you do have to pay for parking, which you can get validated (just makes it a bit cheaper) and there is also valet right in front of the hospital (so bring cash for the drivers), but good luck with that, because dem valet drivers be ca-razy!

That's about it from this ultra long post, thank you again for reading.

Love,
Chris and Patti!

Larger Biopsy on the Lymph node - 11/13/13

I worked in the morning so I wasn't there for the EKG or the surgery for the most part. I will say, getting there in the middle of the day SUCKS. I had picked up Aiden before I went down to the hospital and when we got to the garage, it took 5-6 rotations up and down the 7 levels of the garage to get a parking space, I'd say it took us 30-40 minutes. Anyways, on to Patti's day:

Dr. Barachova and the techs that diagnose the different cancers couldn't conclusively say it was Hodgkin's Lymphoma. They were 99.9% sure but you don't mess around with cancer and even though we actually don't have the results yet, we're just going to keep on going on calling it Hodgkin's.

Along with the biopsy they had scheduled an EKG right before hand. Normally they wouldn't ask for one but since we were going through with the experimental chemo drug, they sponsors wanted an extra look at Patti's heart. The day, though, started like any normal day for us; I went to work while Patti took Aiden to school. A few hours later Patti's Dad picked her up and took her downtown. Again we'll stop right here and thank Don for putting off his busy day to take Patti to the U. An EKG (Electrocardiogram) is similar to the Echo-Cardiogram Patti had earlier but this was a lot quicker and Patti was in and out in no more than 10 minutes.

Next up both Don and Patti went back to the hospital to get ready for her surgical biopsy. For this biopsy Patti was rendered unconscious and a breathing tube was put down her throat. In the middle of this surgery she suddenly had an asthma attack and her throat seized up around the tube. That is something I know Don didn't want to hear about but thankfully she pulled through it by the quick work of the doctors giving her albuterol (interestingly enough the spell checker wants me to change 'albuterol' to butterball, sorry I found that amusing).

Patti has a large lump on her neck of an enlarged lymph node. The doctor made about a two inch cut underneath it and extracted a portion of it for the hospital's tests and for the sponsors of the new chemo drug. At this time I showed up with Aiden and waited with Don in the lobby. Aiden was very good, somewhat nervous, but with some fruit snacks and water he waited just fine and Don even started showing him pictures of Halloween at the Como Zoo on the hospital's computer.

The nurse came out awhile later and said Patti was ready to receive visitors and I took Aiden in. Patti's Dad had some objections about the room scaring Aiden, and I knew it probably would but it will become our life for the next 6 months so I thought we might as well get him used to it. He was very nervous coming in and at first didn't want to get close to Patti. There were a lot of machines and he didn't like any of them and seeing his Mom hooked up to them made him more than a little bit scared. Patti did what she usually does and make jokes, coaxed him over to her and made him feel more comfortable. For someone who had just been through surgery, she was abnormally happy, even the nurses thought so. This helped calmed down our little trooper and soon he was smiling as well, you could tell he was still a little nervous but he took the situation quite well.

I think we were in there for just over a half an hour before Patti was allowed to leave, tons of questions, and a prescription later for some very nice pain killers, we were on our way.

The ride home was awesome with all the traffic jams and the fact that Patti forgot to go to the BATHROOM before we left (sigh...children). We didn't make it to Aiden's Cubbies night at church which was actually his decision not ours haha and that is how we ended our long day.

Info, tests, and more tests...and way too long at the hospital 11/12/13

This is going to be a long post for a very long day, I hope the humor that I have tried to inject in this post will get you through it. For your efforts here's a photo of us at the MN Zoo. Patti wanted to get some family photos for Christmas and before her hair was gone and everyone was calling her  Cue Ball, Bowling ball, domehead, Mr. Clea-what was that hunny? Oh...okay I'll stop...

Photo courtesy of Tara Berg and TGB Photography  

Tuesday was the day after Patti's port was put in, it was the day where we would get results and move on to the next stage, or so we thought....dun dun dunnnnnnnn...

The day started off early, we both had to get up and get Aiden to school before we did anything else. Next up Patti had a rookie symposium or as most people say: "orientation" with the big wigs of her company 'Be the Match.' Unfortunately for her poor husband, she couldn't drive yet because she was on the 24 hour restriction after surgery. We dropped Aiden off and went up North Minneapolis (after a short hiccup), and let me tell you traffic was AWWWEESOMMMEEE. As we dropped off Aiden at school that Patti discovered she forgot her work badge at home. Digging through her purse and searching her bags she couldn't find it anywhere so we had to head home. Freaking out she raced back outside and...promptly found it in her purse. Ladies, your purses are unforgivable and merciless black holes, I don't envy you.

Oh lordy, we're running late so said Patti, yet ahhem some thanks are in order due to a little bit of speeding and reckless driving, we showed up 2 minutes before the orientation started. So what does a husband with 4 hours to burn?

1. Go to holiday and go potty
2. Buy a bag of chips, 2 sausage mcmuffins, 1 energy drink and 2 gatorades
3. Turn on Thor on netflix
4. Pause Thor halfway through and 1 gatorade and energy drink later, drive back to holiday and use the potty
5. Buy water and drive back to Patti's work and continue watching Thor
6. Finish Thor, drive back to holiday after 1 gatorade and 1 water later and use the potty
7. Buy beef jerky and another energy drink
8. Start watching The Avengers
9. Pause halfway through 1 energy drink later and go to holiday and use the potty
10. Patti calls and says she's ready.

I may have drank too much liquid.

Next was the doctor's appointment at the U  and we made it down in just 15 minutes so that was pretty darn great. In the lobby of the Masonic Cancer Center we cracked jokes with the nurses and made life interesting for everyone. Patti is a very up person and her smile hasn't dimmed once while we've been downtown this past week and everyone says they appreciate her demeanor where other people could be crabby, depressed and aggravating she's pleasant, hyper and  happy.

I just want to stop here and give a shout out Maureen who is the Cancer Care Coordinator Nurse who is a very busy person who says multiple patients and doctors throughout the day and sometimes seemingly at once but who always makes us think we're the only patient in the world and she's here just for us. It's people like this who make ill patients feel better and make their situations more tolerable.

I am going to skip the results in this blog posts due to having to tell more family members at this point but I can tell you about a lot of things. First was that Patti got a phone call earlier in the day that they wanted Patti at the same building as her Pulmonary tests for a last minute appointment. When we met with Dr. Barachova who is her main doctor throughout this whole process she informed us that they were still not 100% sure that it was Hodgkins. They were 99.9% it was but with cancer apparently you don't mess around even with that .1%. That next meeting of the day was meeting with the surgeon, Dr. Hamler, who wanted to meet and discuss what they were going to do.

Along with the 2 o'clock meeting they also wanted to schedule an EKG which is part of the new Chemo drug testing regimen and they wanted blood samples as well. So yay more and more tests for us when all we wanted to do was let the knowledge of the results sink in. By this time we were late for the 2 pm appointment and raced over to the other building, met Dr. Hamler, discussed everything, and his assistant scheduled even more blood tests. We then raced back to the clinic and got double the blood drawn and met with the doctors and nurse again.

On the way back from the visit with Dr. Hamler I was a little more than nervous about getting back in the elevator and heading down. I don't like fast rights and it was a fast elevator. So I took the stairs down from the 8th floor. Unfortunately they only go to the third floor so I got onto an elevator that said down. Again, unfortunately, the people that joined me didn't see the down arrow and pressed the button for the 14th floor so I got to go UP again. When we got to floor 5 we stopped for a passenger and we headed down to the second floor. So now I'm stuck on the elevator with people who want to go up, while I want to go down and if I had been paying attention I would have noticed that floor 2 was the floor I actually wanted to get off on to be in the tunnel system but I thought I had to go to the basement. Five minutes into exploring the creepy basement I came to the conclusion I was on the wrong floor and another couple minutes and decrypting the map on the third floor had me back in the tunnel system on floor 2.

Now we're hunky dory right? Wrong, We took the wrong tunnel and ended up in the hospital instead of back into the clinic. We're new at this, our bad...

I'm being very vague about the results and its for a reason, it deserves it's own post, in this one I just want to explain our long day. The first weeks of cancer treatment involve a lot of tests. They are exhausting, hectic and stressful. The people involved: doctors, nurses, assistants, etc. at the U of M and more than likely most other places are very professional, empathetic, and want to see you through it as quickly and efficiently as possible. We've been very lucky from the start where it can take some weeks to get an appointment with an Oncologist (Dr. Barachova is ours), we got in immediately, within days. Then we got our schedule for the next week and a half and it called for many early mornings and definitely long days. New tests have sprung up almost daily to help everyone better give a better prognosis of what is specifically afflicting Patti. Now with getting into the experimental chemo treatment program even more tests are needed so not only the hospital can get samples, test results, etc. but also the sponsors of the new treatment.

We do have our first date for chemo, along with that will come a pretty much organized and regular schedule for the next few months, that we don't have quite yet. Again explaining chemo, our results and how this will affect us will come with its own and equally long post, but that will be after more people are told.

I completely went off on a tangent there but at this point I figured most people were like: Where da heck are the results, how is she, yada yada yada, even though I already said I wasn't going to explain them. I stopped, explained the reasoning, lets move on.

So we got back to the Doc's and now we're actually going over each drug of chemo, our nurse Maureen is the one explaining each drug and its effects. It's nothing that gets us too excited nor does it make us feel any better but they have to be explained and very thoroughly if we are going to be prepared for the worst and hoping for the best. It's getting close to 4:30 pm by the time both doctors (I'll talk about Deb, the second doctor, in the chemo post) basically say it's too late for the EKG we'll do it tomorrow before the Lymph node surgery.

I think the best part of my whole entire day there was the fact I had parked on the top level of the parking garage (more out of necessity over want), and got to see this at sunset:

What a beautiful stadium at a very pretty time of day. If there wasn't a crane in the way it would be perfect. I know Patti didn't get a whole lot out of a stadium where players score 'hoops' (inside joke) but just the view all around from that vantage point relaxes the soul.

 I won't get into the crazy drive to Patti's parent's house or how bad the neighborhoods we went through were but we arrived at their house weary, bleary eyed but happy to see our boy. Her parents have just been incredible throughout this first few weeks and I know tons of people; family and friends, have offered to help (Thank you Donny and Suzie for watching Aiden!!!) with things that we may need, but I do believe for the most part you are going to fight these two wonderful people off. Although, at some point some sort of Battle Royale might just be what Patti needs to feel better so keep your calendars free.

Next up I will talk about the Lymph node surgery, then even though it's out of order of events, I will talk about Patti's results and what the heck chemo is.

Thank you!

On second thought, lets not use the veins, tis a silly thing. - 11/11/13

The veins get a work out with cancer so to save them from abuse that comes with blood draws, chemo, etc. we decided to have a port implanted in her chest.





From http://www.norcalvascular.com:

"An implantable port is a medical device that consists of two components. The first is a thin, soft, plastic tube called a catheter that is typically inserted (tunneled) under the skin of your chest and courses over the collarbone into a large neck vein. The catheter tubing connects to the second component called a reservoir that is implanted under the skin of the upper chest. The port reservoir will show as a small bump underneath your skin, which can be felt but is not visible on the outside of your body. To use the port, a medical professional will pass a special type of needle through the skin into the port reservoir allowing medicines to be given into the vein or blood to be taken from the vein."

So the description above pretty much does it but to add to it, it's a little smaller than a quarter and looks pretty darn cool. The doctors use as much or as little of tubing as is required, each person is different. Each time they use it, at the end they inject a blood thinner called Heparin to avoid clotting in the tube and in front of the port. 

We got to the hospital around 8 in the morning via Patti's dad (thank you) and pretty quickly we were called in, from there Patti and I went through the twists and turns of the hospital to get to our room while her dad stayed in the waiting room. After an hour or two of waiting, taking a few tests and watching HGTV in the room we finally met our doctor and filled out some paperwork. We finally coaxed Don into the recovery room and he got there right as Patti was being wheeled out. 

While we waited for Patti's surgery to be done the wonderful Alison stopped by and we chatted. About just over an hour after she left, Patti was wheeled back into the room smiling and joking and being Patti. There's about 2 1/2 inch scar on her chest where the port was put in and Patti says it just feels like it's there, no pain, nothing really although she does ache from the surgery. 

Now whenever they need to put in fluids or chemo or need to take several vials of blood they will use the port. If they only need a vial or two of blood or something minor they will still use her veins. We also found out that anesthesiologists don't use the port at all (our nurse rolled her eyes at this) and will use the veins as well.  Paulette was our main nurse and she is as sarcastic as me (while still very nice and informative) and had a great sense of humor so ba-da-da-da-da I'm lovin it! She'll have some pain later today and into tomorrow when the novacane wears off, but for most part it was a rather simple procedure

Tomorrow will be results and chemo scheduling.

Bone Marrow Biopsy, I wish the Doctor had played 'Operation' - 11/08/13

Friday Patti had a Bone Marrow Biopsy which would be the most invasive test to date.

From the http://www.mayoclinic.com website:

"Bone marrow biopsy and bone marrow aspiration are procedures to collect and examine bone marrow — the spongy tissue inside some of your larger bones. Bone marrow biopsy and bone marrow aspiration can show whether your bone marrow is healthy and making normal amounts of blood cells. Doctors use bone marrow biopsy and aspiration to diagnose and monitor blood and marrow diseases, including some cancers."


So we had some confusion about this test before hand because it said 'Oncology Chair' a half an hour before the Biopsy. We came to the conclusion that we were meeting with a Chair, which probably went to the U of M for schooling and as chairs are already comforting to sit down on, it would be the best thing to help alleviate any stress or concerns we had. It in fact turned out to be just the waiting area for which Patti needed to check in. A shout out now goes Patti's mom for being the chauffeur that day, we really, really appreciate it!
 So to get started there were some hiccups. For some reason Patti's veins makes nurses swoon with envy for their ease of getting into. That being said, once you get a needle into them they tend to seize up faster than Minnesota sports team when asked about if they will make it to the playoffs. Instead of using a vein they had to prick her finger to draw the blood they needed. Then the bed they used was "broken". I don't know how you would do this, or why but apparently the foot end of the bed was in the head area and then vice versa with the head end. Now most people would say how about you turn the bed around. That, apparently is not how hospital beds are made, so after Patti left they were going to "fix" the bed. 
To prep for the needle and drill (sounds like fun doesn't it?) Patti had to get an extensive butt rubs which she says are better than any butt rub I've given her which I just think is bologna so if any ladies want to test my butt rubbing abilities..I mean..well nevermind. They prep the area then give her an IV which gives her the happy drugs. Along with the drugs int he IV she is given local anesthetic Lanocane to kill any feeling in her lower back/butt area. Now for lack of a better term they use a small corkscrew device to drew into the tail bone, from that they are able to get the marrow samples and also the bone samples they need.

After the initial sample was taken the doctor decided they wanted to get another sample from the other side of the tail bone. They shot her full of more Lanocane and went back at it. The only problem was the fact that the doctor has never played the game 'Operation' where if you touch the metal sides the machine buzzed. Now as far as I know, Patti doesn't have metal sides; what she does have, though, are a lot of fun things called 'nerves' and it just so happened that the doctor kept hitting this nerve causing Patti to 'buzz' in the form of her leg kicking out like a dog dreaming. Don't worry we all learn from our mistakes? Well it took a few 'buzzing' instances for the doctor to give up any more attempts on the second sample. I don't think Patti was sad that she didn't try more in this instance.

Bandaged up, up she came home and snuggled up in the chair with her lappy (laptop, her version of a stuffed animal) and a blanket. Thankfully Aiden was staying at Uncle Donny's and Auntie Suzie's house with his cousins because Patti was absolutely wiped and fell asleep before dinner was ready.

Next up on this blogoscope of fun is the 'Implanted Port'

We Welcome you to Cancer Land

We represent the Tumor Guild,
The Tumor Guild,
The Tumor Guild,
and in the name of The Tumor Guild,
We welcome you to Cancer land...

When something like this happens, people tend to get so serious, down, and depressed about the situation. That is not how Patti and I react to these kind of events. Oh we get stressed and anxious just like everyone and sometimes we want to pull our hair out (especially dealing with Aiden haha). Yet, humor is what keeps us upbeat. Now this is a very morbid joke that could have been taken very badly if Patti didn't have a 'good' sense of humor. Is it a good sense of humor? Or depraved? Eccentric? Horrible? Whatever sense of humor it is, it works and it works well in conjunction with mine. 

Immediately following this I was expressing my sorrow that we didn't start going through treatment months earlier so Patti could have a bald headed-themed costume for Halloween: Dr. Evil, Gru, Walter White, etc. Also thoughts on how we would polish her future revealed pale dome beneath what used to be covered by long golden locks of hair. If I wasn't quick enough I would have several bruises on my shins or shoulders from Patti. 

Patti is finding 'Top 10' lists about what cancer people can do over others, finding jokes online and even saying them herself.  There is a time and place for seriousness, telling family and friends, talking to doctors and nurses, going through the tests. But every day situations, the times when we are not in a hospital room and are at work, hanging out with friends and family, humor, fun and enjoyment need to be ever present in our lives.

Needless to say, the jokes will fly from both of us throughout the whole process, sorry if we offend. Actually, I'm not sorry, I will say anything that can possibly keep Patti in good spirits, and she'll do the same thing for me and for herself.

So keep the jokes coming, keep the merriment coming. Smiles, laughter and love are the balm we need more than anything through this whole process.

This post was actually made a week ago but with the seriousness of the 'Telling Aiden' post it sort of felt contrite to post this one right after. Next post will be about the Bone Marrow Biopsy

Thank you all for continuing to read! We love you all.

Test Time, hope Patti studied... 11/06/13

I am a little behind on keeping up the testing that Patti has gone through due to work, my bad!

Wednesday was the biggest day for these initial tests that Patti is going through. Today (Friday) she is going through the Bone Marrow Biopsy which is more invasive than the tests that she got Wednesday and she has a 'port' she'll get implanted on Monday, both, I think, are more involved and and invasive than the tests she went through but by far it was the longest day so far and left her drained and exhausted.

We both woke to the alarm early in the morning, she got ready and left with her Dad and I went back to sleep because I was taking Aiden to preschool. Aiden loved Daddy waking him up because Daddy doesn't rush or have a backbone to rush his precious 4 year old boy. Thanks to Grandpa Phil, Aiden had a bagel for breakfast which he absolutely loved, and loved it so much that he took 30 minutes to eat it, again Daddy doesn't pressure.

So after dropping him off at preschool, I took the long arduous 20 minute drive to the U of M campus (I was kidding about long and arduous, traffic was a breeze, surprisingly). The hardest part of the drive was not running over college students when I wanted to turn, yes I know they have the right of way but just hold up for 5 fricken seconds so I can turn into the parking garage, no, oh okay, I'll wait until the light turns red and I can no longer turn due to Minneapolis Law. Essentially for the next 2 1/2 hours it was a waiting game with Patti's father in the lobby.

The PET scan is a 2-3 hour process which started at 6:25 am. First is taking a radiation slurry which essentially make the lymph nodes around the body turn into a Friday night dance party, lighting up which would be a bad thing (we still don't have the results). After she takes the drugs the hardest part pretty much of the whole day is the fact she has to remain still for a full hour. This means no tv, no more reading, no more books, no more teachers dirty looks. I assume so she doesn't metabolize the drug too fast since it leaves the body relatively quickly, but I haven't had the opportunity to ask. This was fine for her since she was lacking on sleep and pretty much slept for the entire hour.

After she got out, we said goodbye to her Dad who then went on to work for the day. Our next appointment was at 8:30, unfortunately it was 9:30 so we had to race over to the Pulmonary Function Laboratory. I think these people have been through this once or twice since they totally understood why we were late. We had barely sat when Patti's name was called and we were walked into a small room with a large glass enclosed box in the corner. This was the Lung testing area (Hey kids, Pulmonary has to do with breathing) and through a series of tests they took her base line readings to see how her lungs were.

Each test had a purpose of seeing how much air she could breathe in, breathe out, the strength of which she could do either, how well the lungs were absorbing oxygen, CO2, etc. They took these tests again, to get base line readings so that if during treatment Patti had trouble breathing, or just seem to be winded all the time, they could retest her and see if anything had changed.

Last test of the day had us go back to the Hospital for Echo Cardiography. Since the PET scan had us running late, we were late for this appointment as well, but just like the Pulmonary Test we had barely sat when our name was called. Both times being called that quickly I was not brave enough to look in the eyes of the other patients who had been waiting a lot longer than we had and seeing all the 'Who the heck are you budding in line!' in the looks of the angry people.

 So an Echo Cardiogram is a test to look at the heart. It is essentially an ultrasound for the heart and how it is functioning. I could probably tell you a lot more but due to lack of sleep, I dozed off through most of this. Like the pulmonary tests it to take base line readings so if there are any problems later, they can refer back to this as they take more tests. There was a cool laser light where her heart produced amazing colors and if I wasn't I wasn't dozing, I might have turned on some techno and danced around.

That is pretty much it from this day. She was thinking she would go back to work after the tests but they left her so drained she was practically asleep by the time I went to work that day. They weren't invasive but they were more than anything, mentally exhausting and combined with a lack of sleep, Patti definitely needed to rest. I went to work after that, also emotionally drained haha.

Next two posts coming in quick succession will be about humor de-stressing us and then the Bone Marrow Biopsy. Her port implantation post which we are currently going through right now will probably be later today or tomorrow before we get our final results. When we get the final results and our chemo schedule we will not be posting it quickly. We will let family know first, then friends, then ...dun dun dun....THE WORLD!

That is all...

Expectations and guesses meet Reality and give way to more questions

Well we just got back from the Oncologist and of course we learned many things and most of them were good.

First off, the Oncologist is pretty sure its Hodgkin's Lymphoma which is a malignant cancer which is a very treatable and curable cancer. She is not 100% sure so she is checking with certain techs to make sure; otherwise Patti will need to go in for a surgical biopsy where they take a chunk of the main enlarged lymph node to examine.

When I say main enlarged lymph-node, that is to say that the doctor found that on the other side of her neck there are smaller but still enlarged nodes and possibly the thyroid as well.

Patti in the next week will go through a series of tests before she goes through chemo. Yes, chemo. 4-6 months of chemo starting more than likely later this month and then hopefully she'll be on her way to full health.

Tests:

11/6:

1. PET scan, scanning the body "eyes to thighs" for any more signs of cancer'
2. Pulmonary tests, seeing if breathing and lung conditions are okay and getting baseline readings
3. Echnocardiology tests: similar to the lung testing, its to see how the heart is and to get baseline readings

11/8:

1. One unknown test - we actually forgot what this test was, but we're hoping it's full of candy and sodapop, looking at the description I believe it's just a check up on results from the previous tests
2. Bone Marrow Biopsy: Chipping off a piece of tailbone and getting marrow to test

11/11:

1. Port installation: To make chemo and any future tests (blood draws, and other such things with needles) easier, Patti has elected to have a 'Implanted Port' put in her chest. It will be under the skin and just leave a bump, but it will help the doctors and nurses have a place to inject her with all sorts of fun things that make her hair fall out. This is to replace needing to find a good vein every time she has chemo or a doctor needs to take blood, etc.

11/12

1. Oncologist meeting: To discuss final results and then go onto scheduling chemo and maybe the surgical biopsy on her neck nodes.

Again after this we are still a little in the black. We know chemo will weaken Patti, we know that she will have chemo, although, there is a newer drug for chemo that she might get to take that is safer than the standard chemo drugs. There could be radiation in her future as well depending on how far the cancer has spread throughout her body. Chemo treatments will occur once a month for a period of 4-6 months so possibly by our 6th anniversary on June 21st 2014 we could have a clean bill of health which would be the best gift of all.

More posts will be coming as we get the results. Keep sending your well wishes and your prayers to Patti, she will need it!

Telling Aiden...

Aiden dressed as a firefighter for this Halloween

Aiden Andrew Ryan Payne is 4 years old. He is a big boy, if you ask him, not a baby. Over the past year he's grown up a lot. There were periods last year where he would kick or push his classmates or just get in trouble a lot. From then to now he seems to have grown into a polite and respectful pupil at Crossview Early Childhood Center.

Asking for things he says 'please' and usually says 'thank you' after getting what he wanted. Listening ears are on as much as one can expect from a 4 year old and I couldn't ask for a better, more rambunctious and happy go lucky son.

So how do I tell him his Mommy has cancer?

Cancer is a word that isn't in his vocabulary yet. He understands cold, even the Flu, but Cancer is completely void of any definition for him. I believe in honesty and being blunt, even with a child and he already seemed to know that something wasn't quite right. His teachers told us he's been a bit more sensitive and prone to crying which is completely different than what he usually is like.

I sat him down tonight on my lap and told him we had to talk. At first he thought he was in trouble (history of rambunctiousness) and was nervous. He knows what being sick is and for lack of better understandable words I used that and added a 'very' in front of it. 

'Mommy is very sick.'

"Ok." His voice quiet and low, his eyes looking at my chest and not at me.

It was hard to continue because he understood how much 'very' meant to 'sick' and that it meant Mommy wasn't okay. Right now I can only manage to write a sentence or two before I have to stop, think about how our conversation went, center myself and type more words. I hate to make Aiden sad and it breaks Patti's heart as well and she says that the hardest part of her day, since she found out, is when she thinks about Aiden and how her sickness will affect him.

'Mommy is going to be sick for many months while the Doctors make her get better. There are going to be times where she will not be able to play with you as much and will be very, very tired. Do you understand?"

"uh..huh.."

"It will mean Daddy might be taking you to school and picking you up more! You will have to be gentle with Mommy okay? She will stay strong if you stay strong!"

"Okay..."

"We love you and Mommy will get better. We just have to have faith. We have to be strong and we have to help Mommy when she needs it."

He doesn't fully understand, he knows his Mommy is sick, and it makes him sad and probably anxious. Aiden won't fully know what's going on until many years later, he'll see Patti get weak and sick and God willing get better and stronger. There will be many side effects during and afterward we'll have to deal with as a family and we're sad that Aiden has to go through this at such a young age, but maybe it's better when he doesn't fully understand. I love the little guy and besides Patti, he will have the next toughest time during all of this. 

Seeing that cute little smile dim will be the hardest part for both of us.

The Beginning - 11/03/13

I am writing this in Trebuchet because it was my favorite weapon in Age of Empires which is an incredibly awesome franchise if you did not know and I highly recommend it. 

It looks like Patti wants me to write for her because in her words "she's no good at this." I don't know how good I will be at this, I start out strong with many things and then slowly fade away. This I think, though, is more important than other ventures I have started seeing how it deals with my wife's health and will be one of the main ways to keep as many people informed as possible.

This actually isn't the beginning, this is like the afterthought to the beginning. The beginning would be last spring when Patti first realized there was a bump on her neck and then her ignoring it for a few months, thinking it was from stress, a knot maybe, nothing more, before she showed me it and I freaked out. The beginning could also be the ultrasound (Which I almost made a FB post saying that we were having an ultrasound and make everyone think Patti was pregnant)  where we then found out it was probably not a simple cyst that it may be more and a biopsy was needed, but I digress.

So for the first post, first of many I hope and I know Patti hopes as well; I will copy the what I have put in facebook with a few minor differences. Through all of this, I thank you for reading, for taking the time out of your life to bring up this blog. Just by doing so you've shown you care and love Patricia Elsie Payne. My grammar and usage will not be perfect; in fact I am a much better editor than I am actual typist. I will go through this later and go: "Did I really make all those mistakes?" But alas it is what it is and I know you will read it for what it is, and now I prattle on and that's why Patti wants me to do this more than her. (Edit: I already have gone through this post already and have cried many tears at the sheer butchery of the English language. To all the english lit, journalism, etc. majors out there, I am so very sorry!((Edit to the Edit: Did you see the redundancy in that Edit? Holy hannah this is getting out of hand)))

So here is what I posted on facebook:

Patti has been diagnosed with Hodgkin's Lymphoma

Taken from www.cancercenter.com:

"Hodgkin lymphoma (also known as Hodgkin's disease) is cancer that develops from cells in the lymphatic system (part of the body's immune system) called lymphocytes. Lymphocytes are a type of white blood cell that helps the body fight infections."

We don't know much, but what we do know is that Patti has a bulge in her neck caused by one or multiple swollen lymphnodes. After a biopsy we had last week it was found that she did indeed test positive for Hodgkins. 

Tuesday we will be having a meeting with an Oncologist to discuss and more than likely schedule our next steps. From reading a few medical websites along with some cancer blogs the treatments will be chemo and/or radiation over the course of 4-6 months. The doctor has already ruled out surgery as a course of action. Again over the course of reading and asking others I have found out it looks like if found early (within 5 years) it has over a 90% curability (is that a word? it should be if it isn't!) rate and only drops down to the +80% range after those 5 years. We are hopeful and you should be too!

What I am asking for, for now, is some restraint in questions, because we do not have many answers yet. You can ask but most questions will be answered with "I don't know." As we learn answers we will call, text, facebook and blog. We love our family and friends and know you want to know how Patti is doing and I will poke and prod her until she gives me the info and I can blog it. My hope is, through me, this will be in Patti's words. I don't want to type what I am feeling, I want her to let loose her stress, vent and inform. I personally have read many blogs on the subject and this just seems like a great outlet and great information source for others. No cancer sufferer and/or survivor goes through this alone.

I am done preaching now, and will try to keep it at a minimum for your sake. My hands move faster than the brain and before it catches up a full page could be written in what a simple sentence could convey. 

Again thank you for your love, your prayers, and your well wishes.

Love,

Chris and Patti (plus Aiden too)

Here's a bonus to all those VIP members of the blog, a picture of Patti with Gretchen and Laura