Finally, Back in Boston   October 20th, 2011

I had a bit of anxiety this morning when my nurse wandered into my room to tell me the computer scheduling system was requesting a blood draw, which would have required getting punctured, since my catheter had been removed last night. Apparently it’s something that was scheduled automatically based on a past order by the doctor and didn’t get canceled. I declined as advised, and the blood work was marked as “patient refused”.

During rounds the doctors had a bit of a laugh about this, and I was wished a pleasant voyage home.

By 11:40am we were on the shuttle bus to Ronald Reagan National Airport, and by 12:45pm we were checked in and past security (in my wheelchair). I managed the meat, cheese, and mayo of a McDonald’s quarter-pounder, and the fried fish rectangle with cheese and tartare sauce of a Filet O’Fish. Both went down pretty well. Mayo makes a great lubricant, and tartare sauce is pretty good too. No buns because they are dry and I am still adhering to my low-carb lifestyle as best I can. I think broiled duck is on the menu at home for tomorrow, and perhaps the schweinshaxe (pork knee/knuckle) from the freezer (which my Dad had sent me for my birthday) a few days later.

We had arranged SUV transport to get us and our seven checked bags, and five carry-ons, back to our apartment in Boston, and things just barely fit, but by about 4:30pm, we were finally back in the apartment. I cried tears of relief, elation, and happiness – I couldn’t quite believe we were finally here again after 24 days.

There is no place like home (“home” = Boston, and “home home” = Bonaire – hope to get there next spring, finally). Home is also where the cat is, and she was happy to see us and cuddle with all of us.

I rested for a while, and there’s been lots of unpacking going on, so I haven’t gotten to my steam shower yet, but we have two new humidifiers running now, and the dryness here is far less already than in my room at the clinic. The shower is coming before bedtime for sure, though…

This will probably be the last of my daily posts on the blog, as all I will be doing for the foreseeable future is continuing to heal and regain my energy and exuberance (but not too quickly, since that could set me back). I may provide occasional updates over the coming weeks as I discover something new to share. I will also once again notifying people on my e-mail list of updates to the blog starting with this post.

Also, anyone wanting to visit us at the apartment is welcome to do so providing they are not sick or have not been significantly exposed to sick persons within a day of visiting. Drop us an e-mail to confirm timing first though!

The next milestone will be my scans and clinic appointment on November 9th and 10th, and I will certainly post after that. I’ve been told not to have high expectations for the first scan, so please don’t get your hopes up either. Scan 2 in December will be a lot more telling, and should start to show my progression towards NED!

Signing off – tired but happy.

 

Day 13 – Packed and Ready To Go   October 19th, 2011

I managed to eat a whole thigh and drumstick’s worth of chicken from the rotisserie chicken we had last night. Could not eat the skin because it was too spicy, but still a major achievement.

It was a pretty decent night too – only one wake-up for vitals and blood draws. I slept pretty solidly from around 11:30pm to 8:30am this morning. Using Toothelle Mouth Moisturizer to lubricate my mouth before going to sleep was a key part of the better rest I got. It’s a new thing one of my nurses suggested, and I’m glad she did!

I woke to learn that my neutrophils and white blood count had continued to increase since yesterday (not much, but a bit, since I was now off the Neupogen booster shots). Other than a slight deficiency in my potassium and magnesium (cured with pills in the former case, and my final IV infusion for the latter), everything looked good, even with my platelets, which had naturally increased from 21,000 yesterday to 29,000 today. That means my body is starting to heal properly!

Shortly after the magnesium IV infusion ended, my doctor came in to remove my dual-lumen Hickman catheter port. She was unable to just pull it out as my body had already started to form scar tissue around the cuff that’s part of the tubing (and is supposed to let the body’s tissues form a tight, integrated seal, both to reduce the chance of infection as well as to provide additional security from accidental tugs). So I got injected with lidocaine, and she then used a scalpel to free the cuff. The actual removal of the plastic tubing was a non-event after that. The tubing looked shorter than I expect. Krystyana and Linda observed the whole process, but Bas averted his gaze – he’s not into blood or sharp things penetrating human skin. In any case I now have a small bandage covering the original port site, which I will be able to remove in a couple of days. And no more port!

The process, however minor, did tire me out, and I have a little bit of pain at the exit site when I move my arm in certain ways. That apparently frees me from heavy lifting with luggage tomorrow or any other sort of overexertion involving my right arm and upper body. Time for Bas to earn his keep, I think :-)

Our TIL friend Jamie and her husband Jeff swung by to say hi – Jamie was having her one-month scans done this afternoon to see how the TIL with IL-12 treatment she received worked. It’s still a bit early to see definitive results, but we know she will be NED before long!

I managed a low-carb protein shake for a late breakfast, and then for a late lunch, wandered down to one of the cafeterias here at the clinical center. I managed to put down most of a Salisbury steak (which I had the grill master throw back on the grill for me to ensure it was hot enough), and Vitamin Water Zero (which only had a bit of flavor, but was refreshing nonetheless).

After that I was exhausted, and napped with Bas for over an hour and a half. Good snuggles and a good nap.

The girls had gone to the lodge to pack themselves up so they could be ready to go tomorrow, and then came back to pack me up. I sure have a lot of crap stuff here! Fortunately we are flying back on Delta to Boston tomorrow, where Linda, Krystyana, and I all have elite status, which means at least two free bags up to 70 pounds each per person (the benefit rubs off on Bas too). We need it, apparently :-)

Dinner was a daring experience – Chinese Food. I kept it simple, yet experimental, with foods that should all qualify as neutropenic based on their recent cooking temperatures): Egg drop soup (went down pretty well, although a bit thick), Crab Rangoon (went down best with the sweet sauce), boneless spare-ribs (were a bit spicy on the tongue, and had no real flavor to me – needed the sweet sauce too), and fried dumplings (couldn’t manage the dough, but the meat blob on the inside went down well with the soy-based dipping sauce). I only had a small bit of everything, and noticed how off the flavors were from my expectations due to my tongue situation. I tried a bit of hoisin sauce that Linda got with her moo-shu dish – the hoisin had real hoisin flavor to me, but also was a bit too spicy on my tongue. It was good to be able to experiment a bit though, as well as eat more solid foods than I was able to manage only a few days ago. I expect what I can taste and eat will be expanding every few days as my body continues to heal and mend.

I will add that Jamie and Jeff dropped off some mini-cheesecakes. I was able to enjoy several bites of those before becoming full. In retrospect they were the best (and most flavorful) part of my meal, and I should have started with them!

My sleep tonight should be uninterrupted as I no longer need my vitals taken, and won’t have any blood drawn. That will be awesome!

And tomorrow – my destination is my steam shower in Boston (it’s not really a steam shower, per se, but the water it produces is strong and hot, and can steam up the whole bathroom easily)!

Good night all, and thank you for all your support and words of encouragement and love – they have definitely helped me through the last three challenging weeks here!

Virtual hugs to you all!

 

Day 12 – Happy, Happy Day!   October 18th, 2011

What a difference a day (and night) can make. My doctor came into my room early this morning to let me know that my neutrophil counts have soared to 6,960 from yesterday’s 1,960. As a result I was declared non-neutropenic, the warning signs were removed from my door, all my IV anti-biotics were stopped, and I’m down to a couple of pills a day. I will also no longer be getting the Neupogen shots, so my neutrophil counts will like drop a bit tomorrow, but will still be well above 1,000.

Also, my platelets are on the mend by my own body. I was at 20,000 yesterday, and 21,000 today. Still quite low, but improving on their own.

A little while later, during rounds, I was also informed I would be getting my Hickman port out, so I won’t have to deal with maintenance of the tubes in my chest anymore – because they won’t be there! I had expected to deal with them for another two months, but apparently they will no longer be necessary.

Talk about being surprised and elated!

I have also been scheduled to return for my first scan post-treatment on November 9th, so I will be flying in the day before with Linda and out on the 10th.

We fly home to Boston on Thursday afternoon. Tomorrow is a day of observation to make sure everything is still okay. It will also be a day of packing, as I have collected a lot of the comforts of home here – like towels, a bath mat, a duvet, collapsible notebook tables for use on beds, etc.

I also decided I need to get more protein and fat into my system, so instead of broths, I tackled a slice of pizza (managed to eat only the cheese, as the sauce was a bit too spicy for my mouth, the bits of sausage got too spicy over time, and the crust was too dry) and some reheated fajita beef (went down pretty well). The girls are out right now gathering a freshly roasted (to meet neutropenic diet requirements) chicken for us to share. I hope that goes down well too. And I started the day with a protein shake. So my food and caloric intake is improving, and I’m feeling more energetic for it.

Also, being non-neutropenic, I managed a nice couple hour nap this afternoon snuggling closely with Linda (who napped well too).

All in all, a wonderful day.

I’ve been told I can even have dinner off-campus with the family tomorrow night! So tomorrow should be a great day too (I will be getting my port out then as well, so perhaps a little bit of pain, but worth the reward of being free of alien parts in my body).

Yay!

 

Day 11 – Closer to Release   October 17th, 2011

My immune system continues to mend itself, thanks in part to nightly injections of filgrastim/Neupogen – the same drug administered to me to boost my white blood cell counts as part of my stem cell harvest. I have been getting these shots for over a week now. Nice to see they are finally making an impact.

My neutrophils are at a whopping 1960 (compared to yesterday’s 500), and my white blood cell counts are at 2700. Major increase in both, and these are based on 2am blood draws, undoubtably they are even higher now. Unless something goes awry, I will be discharged on Thursday or Friday, most likely (might be even sooner, but I’m not counting on it). Woohoo!

The other good news related to elevated neutrophil countsis that while I will still be more susceptible to germs and need to wear a face mask in confined places, I will no longer be neutropenic, meaning lots more real hugs from Linda and the kids (instead of the half-hugs we were settling for to avoid infection). Also, once I’m determined to officially be no longer neutropenic (three days of neutrophils above 1000 or one day above 5000), I will be taken off most the drugs I am still on, including the two IV antibiotics. Will make for more restful days.

It was otherwise a (good) boring day. I had extra infusions of magnesium and potassium, but nothing else extra. My platelets were at 20 as of this morning, so there is a likelihood of a platelet infusion tomorrow if it drops below with tomorrow morning’s early blood draw and analysis.

The girls spent the day out in DC, at the Newseum, with lunch next door at The Source. I was able to surprise them (under the masterful direction and help of our AMEX concierge goddess and friend, Tara) with special desserts on which the dessert chef wrote a message in chocolate telling them both how I loved them. Krystyana will have to share the pictures she took when she has a chance.

Bas spent the day with me, and we managed to get in three episodes from the first season of the sci-fi series Farscape (thanks to Amazon Prime Free TV), as well as another wonderful walk outside in the sun.

The dry mouth is still here but I find sores my mouth and tongue have started to heal, and indication that my system is slowly returning to some level of normalcy.

A good afternoon nap provided necessary balance, and I now find myself ready to be a day closer to heading back to Boston – a vision that is now finally within grasp.

 

Sadly the vaporizer did not work particularly well last night, so I will just have to try and hydrate more regularly. Linda already has some homecare vaporizer and humidifier equipment sitting in our Amazon.com shopping cart just waiting to be ordered once we know when we are returning to Boston.

And on that note, my nurse brought me glad tidings this morning. My neutrophils had sky rocketed from nowhere to 500! My white blood cells were at 740, and my platelets had stayed at 25 overnight. Woot!

I will probably need some more red blood tomorrow as my red blood cell counts are a bit low, but the doctors say that it’s quite likely I will hit 1000 on my neutrophils tomorrow, which means the countdown towards departure would start.

Two nice surprises today included a spontaneous visit from an old friend, Rebecca, who I had not seen in at least two years, bringing me one of her favorite books and a number of skin care (and head care) products for cancer patients who had had chemotherapy and/or radiation. I’m looking forward to trying them out (the company that makes these is Alra). We caught up on the last couple of years, including the update that her brother and his wife had returned from a vacation in Bonaire last night. Thank you for brightening my afternoon Rebecca!

If anyone else is so inclined, the best times to stop by are between 1:30 and 4:30pm, as I am least likely to be tethered to an IV or napping during those times. We can provide specifics of location on the NIH campus by e-mail to anyone interested. I expect to still be here through Wednesday at least.

The other nice surprise involved a 15-minute walk outside (with face mask on) absorbing the warmth of the fall sun. I was tired after the walk but just loving every minute of it. Unfortunately tomorrow is not likely to be as sunny but I will make the best of it.

My energy levels are definitely improving bit by bit, although I’m pretty sure I will be wheel-chairing it at whatever airports I fly through later this week getting back to Boston.

For tomorrow, the girls will be scoping out the new exhibits at the Newseum, taking advantage of the family membership I bought there last month when I visited that awesome museum. That means Bas will be my personal assistant for the day, and we’ll be watch more of the Farscape TV series he and I have been enjoying together.

Hopes are that neutrophils keep sky rocketing upwards and that all my other blood counts remain good, as I’m longing for a shower that produces steam (mine in Boston), no more IVs, no more middle of the night wake-ups for vitals checks, and no more having to pee into a plastic vessel all the time so my “liquid output” can be measured.

And I am also looking forward to the ability to fling (well, gently drop) a chicken into a pot of water and have it simmer for hours to create a fatty and delicious chicken broth of my own, as well as eat whenever I want to nibble on during the day or night instead of the limited hours and options of the room service I have here. Not that I’m complaining – the clinic has been wonderful, but some normalcy after nearly three weeks of clinical care would be nice too. I can see that normalcy in my future and it’s looking sweet.

 

Day 9 – Immune System Returning   October 15th, 2011

My hopes for a start to the recovery of my immune system have been fulfilled. Yesterday my white blood cell count was hovering between zero and 50 lymphocytes (4000-6000 is normal), and this morning I was at 130, and by evening up to 330.

I may or may not have any countable neutrophils, but with the WBC lymphocyte count increasing, I will start having them soon – tomorrow or Monday for sure. The neutrophils tend to be in proportion (70% or so) to the white blood cells (lymphocytes), but not necessarily when the numbers are small.

In order to be discharged I need to have three days in a row where my neutrophils number 1000 or more, or one day where they are 5000. And my platelet count needs to be steady above 20. I may be out as soon as Wednesday, but it could also be next Saturday, depending on how things go.

While I had a couple requisite naps, my energy levels were definitely a bit better today, and I even got to go outside (with sterile mask on) to enjoy a bit of the sunshine. Haven’t experienced any part of the outdoors in over two weeks at this point. I was pretty wiped out after both my slow walks with the girls (hence the naps).

After my afternoon blood work, I ended up with another 6 unites of platelets, as I was back down to 17,000 (from 23,000 this morning). And I was given magnesium via IV to compensate for a small deficiency earlier in the day.

I still am maintaining a mostly mild fever (99.0-100.6F/37.2-38.1C), which appears to not be unusual for someone who went through the TIL/TBI treatment (and is even considered a likely sign that the TIL are hard at work).

Several of you had asked question about broths and food in general with respect to my mouth dryness and soreness. I am finding I am having an easier time with warm liquids than with room temperature or cold. And thinner liquids create less of a mucous issue than creamy or thick ones. So clear broths with added material (meat protein, maybe some noodles) work pretty well as does warm tea (room temperature tea is not bearable). Solids outside the broths are not very good at this point because they get stuck in my mouth and require lots of water and gagging to get them down.

Linda had me try a thin butternut squash soup today, and I managed to get a fair bit down, but it was still too thick to do again in the next couple of days. We also experimented with apple juice. I couldn’t stand the bitterness and acidity of cold apple juice when I tried it this morning, but after Linda heated it up in a microwave, and it became more more palatable. Go figure.

The respiration department here at NIH also dropped off a new toy which might make sleep easier – it’s a vaporizer that uses oxygen to mist sterile water into a tube and attached mask. It’s very loud, but I have high hopes for it working tonight now that I understand how it works (although I think I look a little alien with the mask on). Would be great to maintain moisture in my mouth and nasal passages while I sleep.

I will leave you all with a webcam capture of the latest evolution of my Mr. Clean look. And no, no plans for any earrings (sorry Dara) :-)

Going for the Mr. Clean look, sans earring

Going for the Mr. Clean look, sans earring

 

The doctors here say that boring is good. Alas, today was not quite as boring as yesterday. It started with a low-grade fever at dawn (38.4C/101.4F), which resulted in my taking Tylenol as well as being put on an IV drip with an even stronger anti-biotic than I have already been getting.

When the morning doctor rounds took place, I was informed that my platelets were at a very low 9,000 per cubic millimeter (normal is 140,000 and higher), exposing me to potential problems with respect to bleeding. Considering that I had bloody sinuses during the night, this was a bit scary. I was also told that there was still no measurable sign of any neutrophils in my blood. Maybe tomorrow?

I was given five units of platelets, and stayed on my IV most the of the morning. Getting another CBC (complete blood culture) this afternoon showed that the platelet infusion has bumped me up to 17,000. Much better but not great. So I’m getting another five units right now as I write this.

The fever has been gone since this morning fortunately, and I had a pretty good afternoon. I even had Linda take me out for a slow 15-minute walk around the clinic. Pretty tiring but it felt good to be moving. The rest of the afternoon was a nap-fest all around. I am coming to appreciate naps more than ever before. Naps are good!

The dry mouth is still a plague, although I have found that I can manage chicken and beef broths as my main forms of sustenance – they are among the least difficult foods to process as they minimize stringy mucous build-up, and cause the least mouth pain. I even managed to get some minced, steamed (over 165F because of my neutropenia) roast beef into me last night via the beef broth, which made my body happy (protein!). Warm herbal teas – blueberry and raspberry – are good too. And Hall’s Sugar Free Citrus Drops are helping a bit too.

I’m also coming to grips with the stubble on my head and face. The lightly-adhesive lint roller is coming in handy, but I still keep having tiny stubble hairs come off in my hands, shirt, pillow, etc. I will be glad when all the stubble is gone, so I can have a real Mr. Clean look, shiny head and all. I like that comparison (thanks Sam!) better than the Telly Savalas or Yul Brunner look.

I’m hoping for no fever overnight and the start of measurable neutrophils in the morning, as that would indicate my body is finally starting to make progress after the necessary destruction to my immune system caused by the chemotherapy and radiation.

Linda and the kids have been wonderful to have around to give me comfort, support, germ free hugs, and ruffles. I have no idea how someone without such a support network would handle this process. So, again, thank you Linda, Krystyana, and Bas. I love you all!

 

Day 7 – Restful day   October 13th, 2011

From Linda…

Jake said he felt less agitated today compared to yesterday. He got a good round of naps and no extra IVs today. His doctors congratulated him on a good boring recovery day and having a good attitude. :-)

Today Krystyana and I visited the National Gallery of Art to see the special exhibit of Italian Drawings which Jake had already seen about a month ago. We hit the supermarket on the return to stock up on microwave Campbell’s Chicken Noodle soup for Jake, plus food to cook for the rest of us at the Lodge.

I took Jake for a pre-dinner walk – three laps around unit. After dinner of beef broth with extra roast beef bits added to it, another three laps around the unit. I suggested a marathon next week – 26 laps!

Tomorrow is another boring day, highlighted by laundry for all.

 

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From Linda…

Today was more of the same but a little less of this and that. They stopped two medications and gave Jake just one batch of platelets, so Jake’s day was more untethered than tethered.

The helpful hint of using a sticky tape roller-style lint remover to get the hair stubble that is still falling out worked wonders – Thanks Mare! And did I mention it is fun too in a silly kind of way. Almost as much fun and making a Mohawk – watch out Bas.

The doctors stopped by in their usual group to see how Jake was doing. They were happy to hear “nothing new, nothing exciting”. At this stage of the game, boring is good. We took Jake for a stroll in the hospital. We played Yahtzee and Crowns. We rubbed Jake’s back and snuggled close to encourage him to eat his chicken noodle soup.

The next change will be the reappearance of neutrophils in Jake’s blood sometime in the next several days as his immune system starts to come back on-line.

 

Day 5 – Off With the Hair   October 11th, 2011

I kept hoping I would be among the 1% of chemotherapy patients who wouldn’t suffer hair loss, but this morning as I scratched my head upon waking up, I managed to pull a clump of hair out. So put me on the 99% side of the hair loss column.

Pulling hair out of my head led me to figure out what other hair will fall out too, and some careful exploration suggests I will retain my arm and leg hair, I may keep my eyebrows and some of my already meager chest hair, but everything else is going.

My nurse this morning mentioned that a recent female chemo patient wore a shirt that said “Chemotherapy Gave Me the Best Brazilian” (I hope I don’t have to explain that further, but if I do, it refers to wax, hair removal, and pain in sensitive regions). It put a smile on my face.

Instead of having clumps of hair falling out all over the place, I decided to take some decisive action, and have Linda shave my head for me – that will only leave stubble to fall out in the coming days.

Linda starts shaving Jake's head

Linda starts shaving Jake's head

In the above image, and the subsequent ones, you may notice a dark mark under my right eye. That’s apparently a burst capillary from a coughing fit I had a few nights back. It is not the result of anyone beating me.

The first step in the head shave was to achieve equilibrium, in the form of a mohawk, as pictured below:

The interim phase of the head shave - a mohawk

The interim phase of the head shave - a mohawk

After that it was a matter of simply shaving off everything that was guaranteed to be falling out anyhow, including my mustache and beard – facial features my kids have never seen me without. Krystyana was cool with that (all these photos are hers), but Bas was a little creeped out.

The final result is below, taken while I was in bed getting yet another blood transfusion (after getting platelets this morning).

Jake with a baldish head while getting his latest blood transfusion

Jake with a baldish head while getting his latest blood transfusion

A couple of things I have discovered with my new-nearly bald head: First, my head gets cold quickly. Linda got me a skull cap a few weeks ago, and that is helping. I also bought myself a monkey head cap (like little kids might wear in winter) at a state fair several weeks ago for when I need to amuse myself. I also have a baseball hat, and a good friend is knitting me another cap.

Second, I now find myself baffled by whether I should use shampoo or soap on my head. I stuck with shampoo this morning only because it was the comfortable, safe option (plus it’s Baby Shampoo, so no tears). But if any of you who are bald or have gone through chemo have input, it would be appreciated.

My understanding is that over the coming few days all my stubble will be falling out. One friend suggested (coming from her friend who had undergone chemo herself) that one of those lint remover rollers that uses light adhesive tape might be a good way to assist the process. Linda and Krystyana are out exploring, so hopefully they will bring one back so we can experiment.

Other than the hair loss excitement today, it’s a pretty routine day: Platelets, blood transfusions, lots of drugs, rest, and struggling with dry mouth. One interesting (although obvious) note: if you get a nose bleed when your platelet counts are down (I was at 13000 today) the bleeding doesn’t stop very easily. I’ve been told my blood counts should start showing a slow increase in a few days, and as with everything, it’s only a matter of time.

While I try to express my thanks privately, I want to give many public thanks to my awesome family caregivers – Linda, Bas, and Krystyana – and to the excellent nursing staff here at the clinic.