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