Luis and I are both big believers in prayer – and we’ve never needed prayers as much as we do now facing our fight with cancer.

We’re so lucky to have so many loved ones – and loved ones of loved ones – keeping us both in their prayers!

 

Prayer Blanket

I wanted to share with everyone something that my mom made for me. It’s a Prayer Blanket. It includes a stitched in section of my Grandma Paulin, who beat breast cancer back in 1970.

My grandma was a strong woman to beat breast cancer. 1970 was a time when cancer just wasn’t very beatable.  When she was diagnosed, her first question was “How long do I have to live?” But her doctors thought she could beat it, and she did. Years of chemotherapy & additional surgeries, but she beat it.

It’s nice to know that I have her genes. The genes of someone who fought and beat cancer. That I come from a family that fights and beats cancer.

Additionally, my dad took this blanket to St. Albert the Great – my old grade school & parish – and had the blanket blessed by the pastor with holy water.

Thank you to both of my parents for all of your love and support!

 

Prayer Map

Everyone in my family and countless friends and colleagues have been praying for weeks, and soliciting prayers on my behalf. I’m on so many prayer lists – it’s simply overwhelming.

Luis, along with several members of my family, are keeping track of where we have prayers coming from. We’d love to get prayers from all 50 states!

We’re off to a good start. Be sure to check out the new Prayer Map page we’ve started. If we’ve inadvertently left out your state, please let us know! And if you have friends or family saying prayers for us in a state that’s not yet recognized, please leave a comment either here on the blog or on my Facebook page!

VIEW THE FULL PRAYER MAP PAGE.

 

Lazy Weekend

Luis and I had a pretty lazy weekend. That’s always our favorite kind, but I am especially thankful for it now as a means to just clear my head and prepare for the week ahead.

On Friday, we had our “First Friday” lunch. That’s a monthly BetAmerica-sponsored lunch. In San Francisco, the whole team goes out for a nice lunch; remote employees like me join in by having a BetAmerica sponsored meal on the day. Usually, I end up at Chipotle. This month, we went out for my ‘last’ Sushi meal. My oncologist has forbidden me to eat sushi during treatment due to the pathogens that may be present on raw fish. That makes sense of me, but Michelle says that it should be fine. Convincingly, she asked if I thought if everyone in Japan with cancer refrains from sushi. Hmm…

We’ve watched a lot of I Love Lucy this weekend. We’re watching on Amazon Prime, which has a “Best Of” series – so not every episode. Somehow, they’ve left off the classic Harpo Marx episode! I’ll need to find that for download somewhere.

We went out for lunch with my parents to BoomBozz. It’s only a couple blocks from our house, so it’s a short walk… but in 15 degree weather, it felt like forever!

My parents have also volunteered to do our laundry for us during the months of treatment, from pick up to drop off. Takes me back to my college days! We’re thankful for every bit of help we can get – even something as simple as a household chore being taken off our plate.

Today, we went over to play a game of Monopoly at my parents’ house. They had their first fire of the year burning in the fireplace, and cooked a big pot of chili.  It all made for a fun, care free afternoon. Despite the huge advantage of being the banker, I was the first player to declare bankruptcy; Luis claimed the victory on the strength of his Boardwalk-Park Place monopoly and Hotels.

 

THANK YOU!

I know I do this on almost every blog post, but I just want to thank everyone for reaching out and offering prayers, good thoughts and support.

It doesn’t get old, so I won’t stop thanking you!

Every time I post a blog update or a Facebook update – it’s two-fold. I like to keep people updated on how I’m doing because I have a lot of people caring about me and wanting to know what’s happening. But I’m also greedy for additional prayers and good thoughts every day!

The love and support has been overwhelming, in the best possible way. I’ll walk into chemo on Tuesday knowing that I have an incredible support system and hundreds of loved one praying for me and holding me in their thoughts.

I am so sorry that I’ve not been able to respond to everyone individually. I read every comment, every text. They all motivate me, keep me strong.

Thank you for all of the Get Well Cards, the phone calls, the Facebook comments, the emails, the text messages. I’ve received financial support, care packages and baked goods. I’m thankful that BetAmerica has been so flexible with my schedule, as I’ve needed to attend dozens of medical appointments over the past two weeks.

And I won’t ever get tired of saying THANK YOU for being there for us when we needed it.

 

Much love,

Merv

I had a busy and eventful day today with three appointments. It didn’t help that I didn’t sleep a wink last night, or that the roads were not great at 7:30am. But the biggest news has nothing to do with any of those appointments:

 

START OF CHEMO

Chemo begins on Tuesday of next week at 1pm.

I am so relieved to finally have a start date for chemo. The diagnosis process takes forever with all the tests and waiting… The waiting has definitely been the hardest part of this process. I am ready to start killing cancer!!

I am nervous and a bit scared about how chemo will affect me. But I know that the drugs have come such a long way, and it’s possible I will only have very muted side effects… at least that is what I am hoping for!

 

DENTIST

Another doctor for me: Dr. Wagner. Thank you to my family for getting me in to see him so quickly!

I got started early this morning with an 8am appointment. This was just a consult where they established me as a new patient and took some X-rays.  After that, they came up with a plan for what needed to be treated or cleaned.

There’s obviously urgency here, as I cannot go to the dentist during chemo. So I was pretty dismayed when the scheduler said the first they could get me scheduled for was February 1.

However, they have been REALLY accommodating at Dr. Wagner’s office and were able to get me in again today at 3:30pm to do the most urgent cleaning – deep scaling the right side of my mouth. They did numb my right side, but I am not going to lie – it was a very painful cleaning! Glad it’s over and not looking forward to the left side.

I’m hoping to get in on Monday for the left side, although I won’t have a set time until they call me on Monday. They’re confident of getting me in. It’s our only shot!

Apparently chemo is hell on your mouth. So hopefully I’m going to start treatment with some fresh gums and excellent mouth health!

 

FERTILITY CLINIC

I made my last trip to the fertility clinic today to unload my last sample and also get the FDA required blood test. I took a picture of the building to share on here because I wanted to show that the Sperm Bank looks like an actual bank! It’s wedged in there, but it’s like a bank! I feel like I can trust them with my sperm.

Of course the first question that came my way from the Front Office Coordinator (Angie) was one which I should have expected but didn’t properly prepare for: Which would you like to do first? Sample or Blood?

It was a tough choice, but I decided to go with the sample before the blood test.

Having done this process before, I completed the task a bit quicker than last time. So when I went back out to the front desk, I get a “Done Already?” DAMN IT! Maybe I should have thought a bit about what the best amount of time spent in the room would be… Not too hasty, but not freakishly long? … Oh well.

Also, is it weird that I got a little emotional leaving the sample cup on the tray in the room?  I mean, those may be the last living sperms I ever… do.

(Okay okay. Maybe not the very last. But it was still a nostalgic moment!)

RESULTS: The office called with my sample results just an hour or so later. I was much spermier this time! On Tuesday, I produced 14 million swimmers.  Today, I produced 126 million!! I’m pretty proud of myself for this accomplishment.

We now have four vials of frozen semen, which means four chances at future insemination.  And of course, we’re still rooting for me to emerge from this whole treatment still fertile.

Blood test was a piece of cake. My arms are looking terrible. I hope they heal up before Tuesday. They are both extremely bruised from all the needles and have so much scabby puncture holes.

 

SLEEPING

Didn’t sleep a wink last night and I was extra annoying to Luis for the entire evening. I plan to knock myself out with some Benedryl tonight. That reliable gets me to fall asleep; it just hasn’t been reliable to keep me asleep. I’ve been waking at, like, 2am or 3am and not able to fall back asleep.

 

I LOVE LUCY

Luis and I are watching I Love Lucy in the evenings. It’s been so many years since I watched all these episodes, most of them are like new to me again. And Luis has never seen any of them. I enjoy watching Luis watch it for the first time almost as much as I enjoy the show itself.

I had forgotten just how funny it is. It really helps take my mind off all the seriousness that’s been happening the past few weeks, and allows me to spend a couple hours every evening just laughing at Lucy’s shenanigans.

In fact, that is what I am going to do right after I post this blog update!

 

UPCOMING APPOINTMENTS:

Friday @ 8:45am – Meet with Dr. DeWees (my surgeon) to evaluate the healing of my surgery from two weeks ago. Seems to be going fine.

Monday TBD – Final dentist visit.

Tuesday @ 1pm – Chemo Treatment #1

We’re so happy to report that we got the best news we could hope for today:

I have Early Stage II Hodgkin’s Lymphoma.

I never thought I would celebrate that news – but knowing what we knew already, that really was the best case scenario.

It means the cancer has not traveled beneath my diaphragm and has not invaded any of my body’s organs. And I am not displaying any symptoms frequent with this type of cancer.

In fact, they only found abnormal lymph node cells in two regions! Excellent news!

The survival and cure rates for Stage II are identical for Stage I. It is over 90% for all patients and rises when you consider only patients diagnosed under the age of 45, then the percentage goes above 95%.

So we have a lot of hope. Our biggest fears of a late stage cancer diagnosis have been put to rest. Now we can move forward with the cancer killing, confident in our chances of success.

 

TREATMENT

It’s likely that we can look forward to a shorter treatment based on the favorable diagnosis.

Dr. Stevens prescribes chemo treatment in 30-day cycles, which each include two full chemo treatments spaced 15 days apart. He predicts that I will need three, possibly four chemo cycles – so six or eight individual chemo treatments.

ABVD – that’s the name of my chemo regimen. It’s the combination of these four drugs:

• Adriamycin
• Bleomycin
• Vinblastine
• Dacarbazine

 

The “A” is red. So I’ll pee red after treatments.

SIDE EFFECTS – hair loss (oh no!), fatigue, nausea/vomiting, sore throat/mouth, skin problems, fever/chills, constipation or diarrhea, decreased blood count, suppressed appetite – at least those are the most common. I got 10 pages of possible side effects, separated out by drug.

NO RADIATION – We may have no need for Radiation. Not only would that shorten the time span of treatment, but it would also save my from possible long term side effects of radiation – namely, a secondary cancer such as leukemia.

 

NO PORT – We’ve decided that, since we are only anticipating 6-8 treatments spaced far apart, we’re not going to surgically implant a “port” to administer the drugs. However, if I decide this isn’t comfortable, we could always decide to port later. Ports are a common chemo administration technique. We’ll rely on my ‘good veins’ in my arms and just do this via IV.

 

They said it’s a good thing I never got into heroin – my arm veins are great for this kind of treatment. Unfortunately I do kind of look like a heroin addict right now – both of my arms are completely bruised from all the blood draws and IVs, all kinds of little poke scabs.

TREATMENT CHECK UP – We’ll get another PET Scan following the third chemo cycle, about three months from now. That will be our first real checkup of how the treatment is working. If it looks pristine, we could simply discontinue treatment at that point. If there are some trouble spots, we could still do another chemo cycle or consider radiation if there is just one or two specific stubborn places.

 

FERTILITY

We also got some unexpected good news from Dr. Stevens. The ABVD does not necessarily guarantee that I will emerge from treatment infertile. There is still a chance that I might come out of treatment and begin reproducing sperm sometime in the year after treatment has concluded.

(The rest of this subsection is rated M for Mature. I’ll be talking about my sperm. Skip ahead if squeamish.)

Nevertheless, we’re moving ahead with cryopreservation. I had an initial appointment this afternoon to consult with the doctor there on how cryopreservation works and to provide my first, ahem, sample.

I’ll know more about how this is going to work tomorrow, but here is what I know now.

• They will test my sample for viability and make sure it’s healthy and potent.
• They will take a sample or samples a divide it up into vials.
• Each vial represents one chance at insemination.
• They can collect as many samples as I want to give them, but its $250 per collection.
• The amount of vials they can fill per collection depends on the volume of sample I give them.

Tomorrow, they’ll tell me how many vials they were able to collect from my sample. So of course I left the office wondering how many vials they will get.

I’ll be honest – the whole process was rather uncomfortable. The cup they use to collect is, well, smaller and shallower than one might expect… yet despite obstacles, I was able to complete the task at hand.

More tomorrow on this. You’re welcome.

 

UPCOMING APPOINTMENTS

Wednesday Morning (10am) – Call the fertility clinic for further instruction and to schedule an FDA required blood test to make sure I don’t have HIV or Hep. Obviously not worried about either of those.

Thursday Morning (8am) – Go to the dentist and get a thorough exam and cleaning. Can’t go to the dentist during chemo, so knocking this out beforehand. Also to clean up anything which may be there lying dormant. The mouth is apparently one of the hardest hit places by chemo, so we really want to make sure I’m in good shape here to avoid infections or complications.

Friday Morning (8:45am) – Check in with my surgeon Dr. DeWees to make sure I am properly healing up from surgery. Only half of the stitches have come off so far, so I can’t really see the healing progress… but the pain has completely gone away and the small part of the incision that I can see looks great.

 

WHEN DO I START CHEMO

SOON!

I can start anytime, actually. The final thing holding me up now is the cryopreservation. Once we’re satisfied that we’ve socked away enough sperm, we’ll begin treatment.

Dr. Stevens said he’s completely comfortable if this process takes a couple weeks.

I don’t want to wait that long and expect to start chemo next week at the latest. As soon as I have a date and schedule, I will let everyone know.

 

THANK YOU!!!

Again, thanks for everyone who called, texted, Facebook’d or otherwise contacted me last night and this morning, sending me prayers and good vibes.

It looks like the prayers and good thoughts are working, based off of this morning’s news!

 

Much love,

Merv

Anxiety is high this evening.

Tomorrow morning we have an appointment with our oncologist, Dr. Stevens. With the results of my PET Scan that I took on Friday, he’ll tell me what Stage my Hodgkin’s Lymphoma is in.

Obviously, we’re hoping for good news. Here’s a quick overview on the four stages:

Stage I – The cancer is found in 1 region of a lymph node.

Stage II – Either one of these conditions:

• The cancer is in 2 or more lymph node regions on the same side of the diaphragm (stage II).

• The cancer involves a single organ and its regional lymph nodes (lymph nodes located near the site of the lymphoma), with or without cancer in other lymph node regions on the same side of the diaphragm (stage IIE).

Stage III – There is cancer in lymph node areas on both sides of the diaphragm, meaning above and below it (stage III). In addition, there may be involvement of an extralymphatic organ (stage IIIE), involvement of the spleen (using the letter “S,” stage IIIS), or both (stage IIIES).

Stage IV – The lymphoma has spread throughout more than one area of the body. Common places Hodgkin lymphoma usually spreads include the liver, bone marrow, or lungs.

(Info source: http://www.cancer.net/cancer-types/lymphoma-hodgkin/stages)

 

Here are the 5-year survival rates for each stage:

It’s worth noting that those percentages go up for patients under 45-years old.

 

We know that I am beyond Stage I, since we’ve been able to identify swollen lymph nodes in various regions. Unfortunately, my previous primary care physician ignored my symptoms when the cancer was localized to a single region.

Hopefully, the PET Scan will show that it has not spread to organs or areas of my body that would constitute a Stage III or IV diagnosis, as the survival rates diminish and the treatment intensifies and goes on for much longer.

 

PHANTOM SYMPTOMS?

With anxiety running high, I’ve been alert for symptoms…

I would guess that everyone, including me, has a hundred minor aches and pains throughout the day that we brush off and instantly forget. But when you’ve been diagnosed with cancer, you might imagine that each and every ache and pain gets a lot more scrutiny…

• Pain in my side or stomach? Has happened to me my whole life. But now I wonder if the cancer has gone below my diaphragm or into my liver. This pain is very mild, but right where Dale said she might have felt trouble. But it only started hurting after she said that. Is it real?
• Tired all the time? I’ve never been a tired person, but I’m tired all the time now. Is that a symptom of the cancer that’s just now presenting itself? Or is it a consequence of me not being able to sleep through the night due to anxiety?
• I feel like I might throw up?  Am I really nauseas at Trader Joe’s? Or am I just feeling extreme anxiety because I’ve just spent 30 seconds looking around at all the people going about their evening cancer free and wishing I didn’t have to go hear a number tomorrow that will define my future?

Regardless of what number I hear tomorrow, I’m hoping that I’ll know whether I’m actually experiencing symptoms, or just making stuff up in my head.

 

CHEMO CLEANING

Since we may be beginning chemo as early as later this week, Mom came over today and we spent a couple hours deep cleaning the house from top to bottom. She brought over some cleaning supplies for us to keep as well.

The house is about as clean as it ever has been since we moved in five weeks ago!

It’s important to have and keep a very clean environment in the home when going through chemo. The treatment takes a heavy toll on the immune system and you become extremely susceptible to disease.

Thanks, Mom! I love you so much 🙂

 

DENTIST

On my to-do list is to try to get in and see a dentist before chemo begins. You can’t go once chemo has started. And chemo can take a heavy toll on one’s mouth with diseases and soars… Yuck! I don’t have a dentist in Louisville yet; I’m hoping that the one that my family goes to can get me in quickly.

 

SMILES

Today’s smile comes from my friend Paige, who collaborated with her daughter Mattie on this beautiful chalk rainbow. I have prayers coming in from sunny Florida 🙂

 

More tomorrow. Much love.

-Merv

Yesterday, Luis and I went to our first appointment to meet our oncologist, Dr. Don Stevens. He is one of the founders of the Norton Cancer Institute.

We came away with a better understanding of what we’re dealing with. They had some good news and some not so good news – but more good news. And everyone is extremely optimistic about our chances of beating this.

This is kind of a long update, just because we learned so much…

 

THE TEAM

We really like the people we spoke with. Dr. Stevens came in last to speak with us for about 10 minutes. He gave us a background of Hodgkin’s Lymphoma and his practice. He told us that when he was in medical school that there was a lot of debate as to whether Hodgkin’s is actually a lymphoma (which it is) and that it used to be called Hodgkin’s Disease.

We also met Dale, a nurse practitioner. She spoke with us more at length about this type of cancer and the usual treatment, and she also examined my full body. She told us about the tests we’ll need next, and the usual course of treatment. She also was very optimistic about the prognosis – that this is a very treatable and beatable disease.

 

TUMORS & ORGANS

During Dale’s physical examination, she felt a lot of trouble spots.

Although I had only identified two swollen lymph nodes myself – one of which was taken out during last week’s biopsy – Dale was able to spot many more. It turns out that I have tumors all throughout my neck and shoulders. I lost count once she got to 8-10 tumors, and she didn’t even feel on my left side due to the swelling from last week’s surgery.

She’s not specifically worried about the amount of tumors that have formed. It’s all still treatable, and we really won’t know more until we get this staged with a PET scan.

Slightly more troubling is that she felt that my liver felt large. If the cancer has spread below the diaphragm and/or into organs, then we’re at least into Stage 3 and possibly 4 cancer. But even if we are there, this is still very treatable, they assured me.

On a positive note, they said my lungs sounded great. And it’s very positive that I am not experiencing any other symptoms.

 

NEXT STEPS

Our next steps are to get a PET Scan and a Bone Marrow Biopsy, before we’re able to get a treatment plan formed and begin treatment.

The PET Scan (Positron Emission Tomography Scan) is a rather simply body scan. Basically, I will have to fast before the test. Then, I will be injected with radioactive sugar, which will expose the cancer on the full body scan. Apparently, all cells use sugar – but cancer does so much more greedily as it grows faster and requires more sugar.

The PET Scan will expose where in my body the cancer is, and how much of it there is… At that point, we’ll be able to know what Stage the cancer is in. (Shown to the left – an example of a PET Scan, not my actual one which I haven’t had yet)

The Bone Marrow Biopsy is probably the most terrifying test I’ve ever heard of. They do this test to make sure the cancer has not made its way to the bone marrow. Basically, they will drill into my hip bone to extract marrow and bone fragment to analyze. And although they will give me some sedatives, I will be awake while this happens. I am not looking forward to this test.

This will all begin next Monday/Tuesday.

 

FERTILITY

Luis and I have always agreed that we want kids. Kids are part of our plan.

Possibly the thing that has me the most down after this consultation is that this treatment will render me infertile for the rest of my life. Don’t get me wrong – I’m very happy to have the lifesaving treatment! It’s just a bummer to have this permanent, consequential side effect. Luis and I are going to (quickly) investigate the feasibility and cost of freezing sperm. Quick analysis looks like a few thousand dollars.

We’ve also learned that any cancer diagnosis all but disqualifies applicants for traditional adoption. So our already tricky road to having kids has narrowed considerably. But we still have a lot of research to do.

 

DIET CHANGES

During treatment, I’ll have to make some adjustments to my diet. Mostly, that means not eating raw vegetables or anything which is known for carrying more pathogens… I can still eat veggies, but they need to be either cooked or the type which can be peeled. Also, no grapefruit; not sure why on that one.

 

And also the most consequential diet change: I have to stop drinking! For, like, the whole treatment period.  But – I think I might seek a second opinion on that!! 🙂

 

FINANCIALS

It sucks to have to worry about finances during a health crisis, but I suppose that is a fact of life here.

After consulting with Dr. Stevens, we’ve decided to delay further tests and treatment until the beginning of the year. We’re sure to blow through our Out Of Pocket Maximum and we’d like to sequester that to a single calendar year. With everything resetting on January 1, we’re going to start accruing the bills on January 2.

It’s really fucked up that health insurance gives people a financial incentive to delay lifesaving treatment. Luckily, we are only delaying ours by a few days.  Dr. Stevens says there is zero health risks associated with this short delay.

Heck, had I listened to my soon-to-be-former general practitioner who told me to “wait and see” for months and months, I still wouldn’t even be diagnosed.

 

SUPPORT

All of the support I’ve received from family and friends have been very uplifting during this difficult time. All the love and prayers being sent really helps to keep a positive attitude.

Luis is going to start working on a “Support Map” to show all the states and countries where we have people praying for us and sending positive thoughts.

 

NEXT UPDATE

I’m not sure exactly when I’ll have my next update… All I expect to learn this week is what next weeks’ schedule will look like. But things should start very fast – it’s possible that I may begin chemo as early as late next week. And I will keep this blog updated with everything I know!

 

Much love.

-Merv